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Long term health conditions >> Dealing with the family >> Dealing with the family

Dealing with the family

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Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Finding out about her life expectancy made her not to want to do her treatment but the support and 'nagging' from family, friends and doctors helped h

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 >> Lynsey - Interview 14 >> She and her husband would love to have a child and their families are supportive. Feels that if she had a child she would have an extra incentive to l

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 >> His parents, sister and grandparents have all helped him cope with arthritis.

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 19-23 >> Rollo - Interview 11 >> Both his parents have given him so much love and support it has made it much easier for him to cope with his ME.

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 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 19-23 >> Lynsey - Interview 14 >> She describes how her mum had to put her own life on hold because she spent all her time and energy looking after her (she has CF).

Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> Says that her mum worries about her because she's a mum but that she also knows when to back off.

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 16-18 >> Donna - Interview 25 >> Despite financial difficulties she feels that her condition has brought the family much closer and she appreciates her stepdad more than before her su

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 >> Men 19-23 >> David - Interview 08 >> His family has given him emotional and practical help since he was two years old. Now he enjoys his independence and asks his parents for advice but h

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 >> 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.

Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She says that because her father has epilepsy, her parents knew what to do and she wasn't overprotected or felt worried about it.

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 19-23 >> William - Interview 22 >> Says that his mother still worries a lot about him especially when he goes out with friends.

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 16-18 >> Mica - Interview 16 >> She and her younger brother have sickle cell but not her sister though she says that her sister knows a lot about the condition and copes well if they

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 >> Says that his younger brother has not seen much of their mum over the last few years because she has to spend so much time with him in hospital.

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 >> Women 24+ >> Lynn - Interview 28 >> Physical pain can place a lot of strain on a relationship. She felt guilty about affecting the life of her partner.

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'.

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 >> Women 24+ >> Nicola - Interview 13 >> Says that at the age of seven she was just a bit short of breath but that her physical problems have got worse since then.

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.

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Diagnosis & learning more :

Physical problems, med's & managing your condition :

Life style :

What makes a good doctor and transition issues :

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