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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.

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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Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

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 >> 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.

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.

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+ >> 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 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+ >> Miriam - Interview 07 >> She differentiates between the 'being ill type of tiredness' and the tiredness that comes from physical activity and discusses how her ME affected her

Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> In her teens she became aware that cystic fibrosis is a serious condition. Her response was 'to go off the rails a little' and stop taking her medicat

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 >> Donna - Interview 25 >> Describes the 'work up' she and her donor (her mother) needed to have before her kidney transplant.

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 >> Her mother donated her own kidney for the transplant so was recovering in hospital and unable to be with her when she had to go for her transplant sur

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 >> 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

Long term health conditions >> Men 16-18 >> Tomas - Interview 09 >> Has played rugby since the age of six and has found that if he uses his inhaler before any game or training session he is usually fine.

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 >> Women 19-23 >> Elizabeth - Interview 01 >> She is 22 years old and finds it useful to take her parents along to the consultation because she says it is easy to forget to ask all the questions y

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

full list of topics

Diagnosis & learning more :

Physical problems, med's & managing your condition :

Life style :

What makes a good doctor and transition issues :

Living with it :

Talking about relationships :

Advice to others :