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• Long term health conditions >> Information and support >> Information and support

Information and support 

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• 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 16-18 >> Mica - Interview 16 >> Her sickle cell support group has an adult and a youth section. They learn about the disease and she gains reassurance from how normal everyone in the

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• 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 19-23 >> Sara - Interview 27 >> Enjoyed meeting people but felt sad for children who could not join in with active play at a juvenile arthritis event. Has contributed to a hospital c

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+ >> 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 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.

• Long term health conditions >> Women 24+ >> Lara - Interview 03 >> Knew very little about epilepsy. It is reassuring to meet other young people who have coped with the condition and says it can be hard to accept infor

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 >> Women 16-18 >> Mica - Interview 16 >> Says that she has wised up and advises other young people to understand that if they smoke or drink alcohol they will get more sickle cell crises than

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• 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 >> Peer support and voluntary groups >> Peer support and voluntary groups

 

Peer support and voluntary groups

• Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> Has not wanted to attend a support group. Really appreciated the care given by a trainee at the hospital and her GP.

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 >> 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.

• Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Friends saw her having a crisis but didn't know about her sickle cell. She explained it to them and they are very supportive. No one has ever been unk

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> She has told her friends about her diabetes and what to do when her blood glucose levels goes high or low. Her diabetes has also helped her make frien

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 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 >> Women 19-23 >> Jodie - Interview 18 >> She 'rebelled' against her cystic fibrosis when she was a teenager and acknowledges that it is important to have someone nagging you and pointing you

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 16-18 >> Donna - Interview 25 >> She was angry with her body for causing her illness and went through a very down period in which she started to self-harm. Her mother, nurses and frie

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 >> Jodie - Interview 18 >> After she finishes her degree, she plans to do a PhD and her goal is to become a university lecturer. Says that her doctors, nurses, family and friend

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 >> Elizabeth - Interview 01 >> It would have been helpful to see the same consultant when she went to the hospital. She should have been told that her scoliosis was a long term cond

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.

• 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 >> Women 19-23 >> Elizabeth - Interview 01 >> She feel very well supported by her GP but receptionists can be a problem when she needs to see or talk to him. She has learned to be persistent witho

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.

• Long term health conditions >> Women 24+ >> Nicola - Interview 13 >> Thinks that GPs and nurses have different roles when it comes to help her with the long-term and everyday control of her asthma and its symptoms.

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 >> Mica - Interview 16 >> She had a very supportive helper in secondary school who would get her to the doctors if she had a sickle cell attack.

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> When she moved school she initially had a bad experience but her teacher encouraged her to give a talk to her class about her diabetes. Her new group

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 >> Sarah - Interview 29 >> Her condition affects her facial features and when she moved schools some classmates bullied her but with the support of her mother and new friends sh

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 19-23 >> Elizabeth - Interview 01 >> She has a few ideas about how schools could help young people with chronic conditions not to miss their education. Thinks that it is a good idea for n

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.

• Long term health conditions >> Men 19-23 >> William - Interview 22 >> On those occasions he has been in hospital his mother and other relatives have approached the school asking for coursework. Despite reassurances they

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 >> Women 19-23 >> Helene - Interview 04 >> At the age of 11 started to attend a private secondary school and despite spending time in hospital was always given help catching up with her school

Helene has had sickle cell anemia since birth. Sickle cell is when the blood cells are shaped like a half moon and they cannot pass through the veins so easily and this causes pain in, for example, elbows and knees. Helene takes penicillin and folic acid everyday and needs to avoid getting cold.

• 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 >> 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 >> 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+ >> Nicola - Interview 13 >> Her boss used to have asthma so he understood when she was off sick with bronchitis. Does not think that her asthma is an obstacle for the type of wor

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

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 >> 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 16-18 >> Joseph - Interview 17 >> His parents, sister and grandparents have all helped him cope with arthritis.

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 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+ >> Lara - Interview 03 >> When she was a teenager she felt angry and blamed her mother for her epilepsy but now their relationship is much better.

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 >> Women 19-23 >> Kate - Interview 19 >> Her mother got worn out trying to cope with her CF when she was young and sometimes needed help from neighbours and family.

Kate was diagnosed with Cystic Fibrosis (CF) when she was 4 years old by a new consultant who spotted the symptoms straight away. Previously, she had been misdiagnosed with other conditions such as asthma and a milk allergy. Kate has very few CF related symptoms and although she has had the odd chest infection, she has never required intravenous antibiotics.

• 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 >> David - Interview 08 >> His family has given him emotional and practical help since he was two years old. Now he enjoys his independence and asks his parents for advice but h

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 >> Men 19-23 >> William - Interview 22 >> Says that his mother still worries a lot about him especially when he goes out with friends.

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 >> Women 16-18 >> Mica - Interview 16 >> She and her younger brother have sickle cell but not her sister though she says that her sister knows a lot about the condition and copes well if they

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> When she was younger she felt that nobody would want to marry someone who could die young. She has recently married her partner of 6 years.

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 >> Women 19-23 >> Lynsey - Interview 14 >> Felt that previous boyfriends were a bit negative about her CF but her husband - who has a niece with CF - has been very accepting and supportive.

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 >> 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 >> 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

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 >> William - Interview 22 >> His friends treat him the same and some know what to do if he were to have a crisis. He does not talk about his condition in college because thinks ev

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 >> 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 16-18 >> Mica - Interview 16 >> Her sickle cell support group has an adult and a youth section. They learn about the disease and she gains reassurance from how normal everyone in the

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> She felt isolated when she was not talking to anyone about her epilepsy.

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.