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  • Clip
  • Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Her diabetes and cystic fibrosis require a very specific treatment. She finds that apart from her medical teams other doctors find it difficult to und

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Had night time leg splints for her arthritis but found it hard to wear day time splints on her wrist. Wished she had kept doing her daily shoulder exe

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Says that she usually saw a different consultant every time she went to the diabetes clinic. She would have liked more regular appointments.

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.

  • Condition
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 19-23 >> David - Interview 08 >> Explains the assessment process for Disabled Student Allowance and the help he got that enabled him to study.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She did her first degree part-time alongside mature students. Did a Masters degree and used time management skills to help her.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and enjoys earning her own money and being more independe

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> He talks to his other friends with ME about how he feels but won't discuss his health with his friends without ME because he thinks it is tiresome.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Both his parents have given him so much love and support it has made it much easier for him to cope with his ME.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Says that doctor-patient relationship is difficult because doctors are used to treating your illness but in terms of ME it's not the case and to recom

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> When feeling ill he becomes emotional and tends to cry. His fellow students at his all male school found this 'weird'.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Feels that things couldn't be better in terms of the support and help he's got from the university, tutors and the student services.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her relationship with her mother has been shaped by her experience of having ME. She didn't want to tell her mother some things because she knew it wo

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> ME affected his confidence particularly when he was a teenager. Says that when he is well he feels more positive about things including finding a girl

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her advice to young people with ME/CFS is to accept their symptoms and take plenty of rest. Be patient.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Doctors should know more about ME because that is the first person you go to when you are ill. Young people suspected with ME should be referred to so

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It is hard to communicate with doctors because you are worried. Doctors should recognise how difficult it is for us to talk to them and not judge us.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Says that she found it easier to cope with other people when she went back to university on a part-time course.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Rollo's story

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her mum found an internet group for young people with ME. She felt scared to ask the GP for information and feels that her GP had no idea what to tell

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It was a massive confidence boost to attend a conference weekend for young people with ME.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Thinks that workshops with other young people are the best way to gain confidence and learn about your illness.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She differentiates between the 'being ill type of tiredness' and the tiredness that comes from physical activity and discusses how her ME affected her

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to discuss this with her doctor.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.
  • Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> Felt ambivalent about being transferred to the adult clinic at the age of fifteen. Found it a scary experience but liked feeling more grown up.

Lynsey was diagnosed with Cystic fibrosis at birth and says that her parents and now her husband are most supportive. She and her husband would love to have a child and they have discussed all the implications involved in such a decision.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> He was taken into hospital as an emergency, unable to breathe. His parents were told that it was time for him to die.

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.
  • Long term health conditions >> Women 24+ >> Lara - Interview 03 >> She talks about the things she dislikes when she goes to see her consultant. But says that her epilepsy nurse is 'brilliant' and has given her lots of

Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She became depressed and lost her confidence after diagnosis but she wasn't offered counselling. Her nurse has provided her with lots of support. Nowadays she jokes about her epilepsy giving it derogatory names and says that it is one way of coping with it. She has no problem in telling others about her epilepsy.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> Took no painkillers for the first 12 weeks of her pregnancy. Worried that her medication might affect the baby and had to stay in bed for much of the

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> Explains what happens at Expert Patient Programme workshops for young people.

Elizabeth was diagnosed with scoliosis at the age of 16. She now works for a Department of Health funded project. She says that as a teenager she 'rebelled' against her condition and stopped taking her painkillers. Her attitude now is to work with her condition rather than against it. She takes regular exercise and does a lot of walking.
  • Topic
  • Long term health conditions >> Finding the right medication >> Finding the right medication

 

Finding the right medication

  • Long term health conditions >> Men 19-23 >> David - Interview 08 >> He has physical problems created by the arthritis and the many operations he has had to have on his spine and legs.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 16-18 >> James - Interview 21 >> His dialysis treatment means that he spends four days of the week in hospital. A year ago he was promised home dialysis but nothing has happened yet.

James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> Talks about his primary school experience in Pakistan, his brother's experience in Britain and his mother's efforts to find a secondary school place f

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Because she had so many physical problems she was off school for a year and a half. She has memories of her school life before she was diagnosed with

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> She describes how her mum had to put her own life on hold because she spent all her time and energy looking after her (she has CF).

Lynsey was diagnosed with Cystic fibrosis at birth and says that her parents and now her husband are most supportive. She and her husband would love to have a child and they have discussed all the implications involved in such a decision.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Until she was 13 she did not think that plastic surgery would be possible. She found out that it was when she saw a specialist in London.

Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an
  • Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> After a year of hospital treatment they found out that they could reclaim some expenses. She was turned down for other benefits because she was above

Donna was diagnosed age 13 with a kidney condition called Mesangiocapillary Glomerulonephritis type II. After diagnosis she was on medication and remained stable for three years. But her condition deteriorated and she needed a kidney transplant. Her mother was her donor. Her sudden deterioration affected her physically and also emotionally. She became depressed and felt rejected and isolated from her then 'group of friends'.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave her another medication that she could accept.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> She was forgetting do to her lunchtime injection at school because she was too busy and at home because she was having dinner at different times.

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.
  • Long term health conditions >> Men 16-18 >> Andrew - Interview 24 >> He went through a 'bad phase' of forgetting his insulin injections and says it was because he found his previous regimen very restrictive.

Andrew has type 1 diabetes and Coeliac Disease. He was diagnosed first with type 1 diabetes when he was 11 years old and was diagnosed with Coeliac 3 years later. He changed his insulin regimen and he finds that the short-acting and long-acting insulin regimen gives him more freedom to choose when and what to eat. He needs to have a gluten-free diet because of his Coeliac which means that he cannot eat wheat, oats, barley and rye. Says that his mother makes very good gluten-free cakes!
  • Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Says that she usually saw a different consultant every time she went to the diabetes clinic. She would have liked more regular appointments.

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.
  • Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> The only - and best - way to have sweets is after a meal, as a 'treat'. At one point she was eating too many sugary things and having lots of diabetic

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.
  • Long term health conditions >> Men 19-23 >> David - Interview 08 >> He has physical problems created by the arthritis and the many operations he has had to have on his spine and legs.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Doctors should know more about ME because that is the first person you go to when you are ill. Young people suspected with ME should be referred to so

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her advice to young people with ME/CFS is to accept their symptoms and take plenty of rest. Be patient.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> ME affected his confidence particularly when he was a teenager. Says that when he is well he feels more positive about things including finding a girl

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her relationship with her mother has been shaped by her experience of having ME. She didn't want to tell her mother some things because she knew it wo

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Both his parents have given him so much love and support it has made it much easier for him to cope with his ME.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> He talks to his other friends with ME about how he feels but won't discuss his health with his friends without ME because he thinks it is tiresome.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and enjoys earning her own money and being more independe

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She did her first degree part-time alongside mature students. Did a Masters degree and used time management skills to help her.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Feels that things couldn't be better in terms of the support and help he's got from the university, tutors and the student services.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> When feeling ill he becomes emotional and tends to cry. His fellow students at his all male school found this 'weird'.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Says that she found it easier to cope with other people when she went back to university on a part-time course.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She differentiates between the 'being ill type of tiredness' and the tiredness that comes from physical activity and discusses how her ME affected her

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It was a massive confidence boost to attend a conference weekend for young people with ME.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Says that doctor-patient relationship is difficult because doctors are used to treating your illness but in terms of ME it's not the case and to recom

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Says that doctor-patient relationship is difficult because doctors are used to treating your illness but in terms of ME it's not the case and to recom

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Says that she found it easier to cope with other people when she went back to university on a part-time course.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It was a massive confidence boost to attend a conference weekend for young people with ME.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Thinks that workshops with other young people are the best way to gain confidence and learn about your illness.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her mum found an internet group for young people with ME. She felt scared to ask the GP for information and feels that her GP had no idea what to tell

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Rollo's story

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She differentiates between the 'being ill type of tiredness' and the tiredness that comes from physical activity and discusses how her ME affected her

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> When feeling ill he becomes emotional and tends to cry. His fellow students at his all male school found this 'weird'.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Feels that things couldn't be better in terms of the support and help he's got from the university, tutors and the student services.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She did her first degree part-time alongside mature students. Did a Masters degree and used time management skills to help her.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and enjoys earning her own money and being more independe

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> He talks to his other friends with ME about how he feels but won't discuss his health with his friends without ME because he thinks it is tiresome.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Both his parents have given him so much love and support it has made it much easier for him to cope with his ME.

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her relationship with her mother has been shaped by her experience of having ME. She didn't want to tell her mother some things because she knew it wo

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> ME affected his confidence particularly when he was a teenager. Says that when he is well he feels more positive about things including finding a girl

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Doctors should know more about ME because that is the first person you go to when you are ill. Young people suspected with ME should be referred to so

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her advice to young people with ME/CFS is to accept their symptoms and take plenty of rest. Be patient.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It is hard to communicate with doctors because you are worried. Doctors should recognise how difficult it is for us to talk to them and not judge us.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> In her teens it was difficult for her to accept that for medical reasons she couldn't go out and get drunk like her friends did but now she doesn't mi

Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.
  • Long term health conditions >> Men 16-18 >> James - Interview 21 >> He is not allowed to do any contact sports or go swimming. Under the supervision of his PE teacher he is allowed to go to the school gym and do some v

James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.
  • Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> Says that since the age of ten he has been restricted regarding contact sports and that this situation is normal for him. He used to do a lot of swimm

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
  • Long term health conditions >> Men 16-18 >> Jamie - Interview 12 >> He thinks that it is not fair on him to be unable to play football at school. He does some footie in the garden with his sister and friend but that's

Jamie has a heart condition called hypoplastic left heart syndrome. He was diagnosed when he was six days old and underwent pioneering and life saving surgery. He gets breathless very easily and is not allowed to play any contact sports. Jamie absolutely loves football so at home he plays it in the garden with his sister and a neighbour.
  • Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> She had to make a lot of changes to her diet because of kidney disease. Her dietician gave her a lot of advice and information including a booklet wit

Donna was diagnosed age 13 with a kidney condition called Mesangiocapillary Glomerulonephritis type II. After diagnosis she was on medication and remained stable for three years. But her condition deteriorated and she needed a kidney transplant. Her mother was her donor. Her sudden deterioration affected her physically and also emotionally. She became depressed and felt rejected and isolated from her then 'group of friends'.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> She remembers reading medical journals in her early teens because she wanted to know more about her condition. Tutors at university have been very sup

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Talks about what it is like to see several specialist teams in different cities. Feels most comfortable with the team she has been seeing the longest.

Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an
  • Long term health conditions >> Taking and not taking medication >> Taking and not taking medication

Taking and not taking medications

  • Long term health conditions >> Women 24+ >> Nicola - Interview 13 >> A review with a specialist nurse showed her that she was not using her inhalers correctly.

Nicola has moderate asthma and needs to take her inhaler everyday to keep her symptoms under control. She does not get many asthma attacks now, but is prone to developing bronchitis which can last for up to a week. Nicola recently saw an asthma nurse and found it most useful. It provided an opportunity to discuss her asthma and treatment in detail.
  • Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> She was diagnosed at 13 with kidney disease. For 3 years she was fine on her medication but then her condition deteriorated and she had to be put on d

Donna was diagnosed age 13 with a kidney condition called Mesangiocapillary Glomerulonephritis type II. After diagnosis she was on medication and remained stable for three years. But her condition deteriorated and she needed a kidney transplant. Her mother was her donor. Her sudden deterioration affected her physically and also emotionally. She became depressed and felt rejected and isolated from her then 'group of friends'.
  • Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She lacked basic information about epilepsy and its treatment. It was only when a new doctor changed her medication that she found out more.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.
  • Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks the resources that exist need to be better publicised.

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
  • Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> One problem that has resulted from her epilepsy is memory loss. She feels a bit scared as she is dealing with new difficulties as a result.

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave her another medication that she could accept.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions >> Men 16-18 >> Tomas - Interview 09 >> Has more asthma attacks when the weather is bad, or if he does not uses his inhaler before doing sport. He also needs to try to avoid dust mites and p

Tomas has had asthma since he was six months old. Apart from asthma, Tomas has developed various allergies and he attends a specialised hospital clinic. He says that the work that Asthma UK does at schools has helped to improve the understanding of the condition among teachers and children.
  • Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> She needs regular blood tests to monitor her liver function because the drug she takes can damage the liver. Also she can't drink much alcohol.

Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an
  • Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> He had taken various drugs for his arthritis without much success, until a consultant suggested he tried a new drug called Enbrel.

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
  • Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She knows that if she does want to get pregnant she will probably have to change her treatment to avoid harming the unborn baby.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.
  • Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> Took no painkillers for the first 12 weeks of her pregnancy. Worried that her medication might affect the baby and had to stay in bed for much of the

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.
  • Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> In her teens it was difficult for her to accept that for medical reasons she couldn't go out and get drunk like her friends did but now she doesn't mi

Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.
  • Long term health conditions >> Men 19-23 >> David - Interview 08 >> Says that young people on medication ought to be very careful when drinking alcohol. He is not affected by it but only drinks in moderation.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.
  • Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is not well prepared to deal with the issue of drug taki

Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.
  • Long term health conditions >> Men 19-23 >> William - Interview 22 >> He says that he doesn't need to take his medication but he prefers to take the folic acid and penicillin every day to be on the safe side and avoid si

William has lived with sickle cell anemia since birth. His mother and father have both got the sickle cell trait but his sister is not affected. When he was a child he remembers that he was in hospital many times. His condition is much improved now that he is older. He takes penicillin and folic acid everyday and says that he does not need to take medication but he does it because his aim is to prevent crisis.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Because she had so many physical problems she was off school for a year and a half. She has memories of her school life before she was diagnosed with

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions >> Women 24+ >> Nicola - Interview 13 >> From experience she knows that if she gets wheezy and does not have her medication with her she will feel horrible and her evening will be interrupted

Nicola has moderate asthma and needs to take her inhaler everyday to keep her symptoms under control. She does not get many asthma attacks now, but is prone to developing bronchitis which can last for up to a week. Nicola recently saw an asthma nurse and found it most useful. It provided an opportunity to discuss her asthma and treatment in detail.
  • Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> When his arthritis was active he never knew in advance if he could go out or would have to cancel. Now in remission he does not need to plan ahead.

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Because she had so many physical problems she was off school for a year and a half. She has memories of her school life before she was diagnosed with

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> Her epilepsy affected her memory and it was hard to do her Spanish A level course. Some of her teachers have been very supportive. She is now doing an

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.
  • Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her memory problem.

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.
  • Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> One problem that has resulted from her epilepsy is memory loss. She feels a bit scared as she is dealing with new difficulties as a result.

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.
  • Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> He had taken various drugs for his arthritis without much success, until a consultant suggested he tried a new drug called Enbrel.

Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave her another medication that she could accept.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Men 19-23 >> David - Interview 08 >> Talks about what he needed to do to get a specially fitted car and what it means to him to have passed his driving test.

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.
  • Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> Explains her condition and her daily care routine and says how hard it is sometimes to get a good balance between her activities and the looking after

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She did her first degree part-time alongside mature students. Did a Masters degree and used time management skills to help her.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Surgery and hospital treatments >> Surgery and hospital treatments

Surgery and hospital treatments

  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> She did her first degree part-time alongside mature students. Did a Masters degree and used time management skills to help her.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and enjoys earning her own money and being more independe

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.
  • Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the
Long term health conditions discussion on MyYouthhealthtalk

  • Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> Has tried very many treatments over the years to control her chronic eczema and now knows what works. Says that a good diet and drinking water help he

Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.
  • Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> On a busy day she would do her physio before leaving home and use her inhalers on the bus. Says that you need to prioritise and do the one that it is

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.
  • Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> She is worried about the side effects of long term use of steroid cream. She uses it only when her eczema is very bad.

Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.
  • Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Finding out about her life expectancy made her not to want to do her treatment but the support and 'nagging' from family, friends and doctors helped h

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.
  • Long term health conditions >> Men 16-18 >> James - Interview 21 >> His dialysis treatment means that he spends four days of the week in hospital. A year ago he was promised home dialysis but nothing has happened yet.

James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.
  • Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Says that provided she takes antibiotics she can go on skiing trips and she is absolutely fine and does not get any chest infections.

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.
  • Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Argues that people who smoke and drink do not deserve their free treatment. Says that people who have given up smoking and drinking feel much better a

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.
  • Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> The GP ignored her when she was talking about a new treatment. She found it rude and felt angry. She wants more information from health professionals

Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.
  • Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Does not need a high fat content diet for her cystic fibrosis because her weight is fine but she finds it hard to control her blood sugar levels parti

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.

full list of topics

Diagnosis & learning more :

  • On being diagnosed
  • Information and support
  • Peer support and voluntary groups

Physical problems, med's & managing your condition :

  • Pain and physical problems
  • Finding the right medication
  • Taking and not taking medication
  • Surgery and hospital treatments
  • Looking after yourself: getting the balance right
  • Dealing with feelings and emotions

Life style :

  • Alcohol, smoking and illegal drugs
  • Sport and exercise
  • Diet

What makes a good doctor and transition issues :

  • Getting on with your healthcare team
  • Talking to doctors and nurses
  • Transition from children's to adult services/clinics

Living with it :

  • Contraception, pregnancy and sexual health
  • Going out
  • School life
  • University
  • Going to work

Talking about relationships :

  • Friends
  • Dealing with the family
  • Boyfriend, girlfriend and sex

Advice to others :

  • Advice to other young people
  • Advice to doctors and nurses
Long term health conditions

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