Subject index

Clip
Long term health conditions >> Men 16-18 >> Jamie - Interview 12 >> He does not always understands what the consultant is saying when talking to his mum during the consultation but afterwards his mother explains things

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 16-18 >> Mica - Interview 16 >> Says that the doctors and nurses she sees at the hospital for her sickle cell do really want to help her even when sometimes she thinks they might wan

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 >> Elizabeth - Interview 01 >> Says that doctor's language is 'over the top' and thinks that some can be insensitive and impersonal.

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 >> 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

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 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 16-18 >> Lucy - Interview 05 >> Says that she usually saw a different consultant every time she went to the diabetes clinic. She would have liked more regular appointments.

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 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

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 24+ >> Lara - Interview 03 >> She talks about the things she dislikes when she goes to see her consultant. But says that her epilepsy nurse is 'brilliant' and has given her lots of

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 >> Sara - Interview 27 >> Health workers need to be gentle and to allow plenty of time for the consultation.

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 16-18 >> Lucy - Interview 05 >> Teenagers need regular and frequent appointments. Doctors need to ask more questions about how you are controlling your diabetes.

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!”
Join the Long term health conditions discussion on MyYouthhealthtalk

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 :