Subject index

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Long term health conditions >> Men 19-23 >> David - Interview 08 >> He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal' and then diagnosed in your teens.

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+ >> 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 16-18 >> Lucy - Interview 05 >> Says that her mother became less protective and more understanding after she herself was diagnosed with type 1 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.

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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Topic
Long term health conditions >> On being diagnosed >> On being diagnosed

Being diagnosed

Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that symptoms started to deteriorate.

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 >> Andrew - Interview 24 >> He was 11 and changing schools at the time of his diagnosis with type 1 diabetes. Initially he found it hard to control his diabetes and was a bit dow

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 >> Men 16-18 >> Tomas - Interview 09 >> Was diagnosed with asthma at age 6 months and was given his first inhaler at the age of two. He is able to control his asthma better than when he was

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 >> Men 16-18 >> Joseph - Interview 17 >> Within days after getting food poisoning all his joints had swollen up. Doctors diagnosed him with arthritis and for a while he had to use a wheelchai

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 >> Doctors didn't seem to believe her mother when she said her daughter was very ill. She was misdiagnosed with other illnesses before one doctor did a t

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 >> Hassan - Interview 30 >> His mother suspected that something was wrong because he used to fall down a lot. The doctor (in Pakistan) dismissed her concerns and told her to have

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+ >> 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+ >> Lynn - Interview 28 >> It has been very difficult to live with physical symptoms and not really know what it is causing them. Her condition is described as chronic pelvic pa

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'.