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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 >> Women 24+ >> Catherine - Interview 02 >> Her father has epilepsy so she grew up with somebody with the same condition but her own diagnosis came as a shock to her. Feels she wasn't given enou

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 24+ >> Clint - Interview 26 >> The doctor didn't make him aware that in 3% of the cases HIV patients develop AIDS much earlier than the predicted ten years after contracting the vir

Clint was infected with HIV at the age of 17 from a partner and, at the time he lacked any knowledge of HIV. Clint rapidly developed the symptoms of the AIDS defining illnesses. Although it was initially suspected he had cancer (a common kind of presentation for AIDS), he in fact had a positive HIV result.

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.

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 24+ >> Nicola - Interview 13 >> Thinks that people should be given written information when they are diagnosed and also have opportunities to get more information as they grow older.

Long term health conditions >> Men 24+ >> Clint - Interview 26 >> Says that young people should know where sexual health (GUM) clinics are and what they need to do to avoid sexually transmitted diseases.

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+ >> Lynn - Interview 28 >> It can be very reassuring to hear that others have had similar experiences - whether they are positive or negative. Her GP has emailed her with articl

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 >> Helene - Interview 04 >> Originally learnt about sickle cell disease from her mother. She has looked for information on the internet but was upset to find negative information

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 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 >> 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 >> 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.

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+ >> 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 >> Women 24+ >> Catherine - Interview 02 >> She was made aware of the importance of using contraception when having sex because the drug she takes for her epilepsy carries increased risks of pre

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 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 >> 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 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

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.

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

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Tell young people everything they need to know about sickle cell.

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.

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 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

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.

Long term health conditions >> Women 16-18 >> Charlotte - Interview 10 >> No-one explained to her classmates about her epilepsy and absence seizures. As a result some thought she was an attention seeker and she lost friends.

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 >> 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

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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Information and support

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