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Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have appreciated more opportunities to ask questions.

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 >> Annette - Interview 31 >> Her biggest criticism is that consultants are ill prepared to advice young people about illegal drugs. She wanted to discuss this issue but felt judge

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 >> Women 16-18 >> Charlotte - Interview 10 >> Her first children's consultant talked to her mother and not to her. Her adult consultant is nice but she finds the physical environment old and depre

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 >> 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 >> 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 >> Kate - Interview 19 >> She felt ill-prepared for what would happen at the adult clinic, and was especially shocked at the lack of privacy for lung-function tests. She was in

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+ >> Catherine - Interview 02 >> Only when she saw an epilepsy specialist was she given effective drugs. Since then she could learn to drive.

Long term health conditions >> Men 19-23 >> David - Interview 08 >> His gradual transfer built up his confidence. Suggests what needs to be done to make sure that young people have a successful transition from the chil

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 >> Elizabeth - Interview 01 >> She went through a phase of not wanting to take painkillers for her scoliosis but found the pain unbearable.

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

Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> At the age of thirteen her consultant told her that she couldn't get pregnant while on medication.

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 >> 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 >> Men 19-23 >> David - Interview 08 >> As a teenager he lacked self confidence but university and the experience of being seriously ill changed him into a more outgoing person. His social l

Long term health conditions >> Women 19-23 >> Helene - Interview 04 >> She has learnt from experience about taking care of herself. Says that when you are a teenager you are trying to be like everyone else but your body i

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 >> Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her memory problem.

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 >> Men 16-18 >> James - Interview 21 >> He felt excluded and lonely when he was having treatment at boarding school and eventually became so depressed that he thought of stopping his dialysi

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 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 16-18 >> Jamie - Interview 12 >> Enjoys playing football and finds it frustrating if he is not able to play at school.

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 19-23 >> Sara - Interview 27 >> She felt depressed for much of secondary school but has now learnt to focus on a series of goals and feels much more positive.

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.

Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> She thought that alcohol didn't affect her but one time she drank a lot and ended up in hospital with acute pancreatitis. She hasn't drunk alcohol sin

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 16-18 >> Mica - Interview 16 >> She drank a lot of vodka which triggered a sickle cell crisis. She still remembers the pain and says that after that she can't stand alcohol.

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+ >> Catherine - Interview 02 >> She does drink alcohol and it doesn't affect her but she was worried about her epilepsy and alcohol when a teenager.

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

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!”
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full list of topics

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What makes a good doctor and transition issues :

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