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• 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 >> Men 19-23 >> William - Interview 22 >> He says that he knows and respects his limits and when in pain, he just rests until he feels better. He hasn't had a sickle cell crisis for the last t

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 >> 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 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 16-18 >> Lucy - Interview 05 >> She says that the advice and information given to her by the diabetes nurse have been most useful and as a result she is less inclined to drink or to

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 feels reassured by his consultant and diabetes nurses and at ease to ask questions. Trusts their advice because he knows they are working in his be

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 >> Donna - Interview 25 >> At every stage of her illness she has felt reassured and well advised by her medical teams. Some consultants seemed to object if her little brother ha

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 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 >> 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 19-23 >> Lynsey - Interview 14 >> She was unprepared for her transition and found it hard. As a teenager there were other things going on in her life and says that medical staff need t

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 >> Talks about her own experience and gives advice to young people with (CF) about how to go about finding a job.

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.

• 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 >> 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 24+ >> Nicola - Interview 13 >> Make sure that young people know what help is available and direct them to the right places.

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 19-23 >> Sara - Interview 27 >> Health workers need to be gentle and to allow plenty of time for the consultation.

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 >> Jodie - Interview 18 >> Be aware teenagers will lie to you about taking medication but you just need to nag, nag and nag. Teenagers will grow out if it.

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 >> Sophie - Interview 15 >> Look at things from the individual patient perspective. Not all CF patients are the same.

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 >> 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 16-18 >> Lucy - Interview 05 >> Teenagers need regular and frequent appointments. Doctors need to ask more questions about how you are controlling your diabetes.

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 24+ >> Catherine - Interview 02 >> Listen to what young people are saying but also listen for what they are not saying. Ask questions about sensitive or embarrassing issues.

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+ >> 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 19-23 >> Katie - Interview 23 >> Eczema is not a superficial or just a cosmetic issue. It affects how young people feel about themselves.

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 16-18 >> Mica - Interview 16 >> Tell young people everything they need to know about sickle cell.

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.

• Topic
• Long term health conditions >> Advice to doctors and nurses >> Advice to doctors and nurses

Messages to doctors and nurses

• Long term health conditions >> Advice to other young people >> Advice to other young people

 

Advice to other young people living with a chronic condition

• Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She advises other young people with arthritis to keep doing their exercises and to give up drinking alcohol and smoking. Keep positive even when it is

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 >> Mica - Interview 16 >> Tells other young people with sickle cell that having sickle cell doesn't make them abnormal and that, they should 'go out there' and pursue their goa

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 >> Men 16-18 >> Hassan - Interview 30 >> He tells other young people with muscular dystrophy not to be scared. God gave him a brain and a heart and an ability to make others happy.

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 >> Kate - Interview 19 >> She thinks that young people with cystic fibrosis should make the most of the facilities and expertise available to help them keep on top of their con

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 >> Men 16-18 >> Joseph - Interview 17 >> His advice is to keep positive. Don't let it defeat you. If you let your illness get you down you are going to feel worse.

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+ >> 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 16-18 >> David - Interview 20 >> Keep calm if your asthma starts to worry you and tell your friends what to do if you have a bad asthma attack. Join the activities organised by Kick A

David was diagnosed with asthma at the age of 5 and his mother thinks that it was triggered off by a really bad cold. His asthma is mild and he is not on regular medication but he uses his inhaler before doing sports. He sees a specialist nurse once a year for check ups.

• Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> If you are feeling down and depressed then talk to someone and/or write little notes about your feeling so friends and family knows what it is going o

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 16-18 >> Charlotte - Interview 10 >> She knows that parents do care but they need to be less protective and let the teenagers grow up.

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

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 >> 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 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.

• 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 >> 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

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