Subject index

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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 16-18 >> Donna - Interview 25 >> Was alarmed when she was told that she would have to have dialysis but found the nurses helpful and it became a way of life.

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 16-18 >> James - Interview 21 >> His dialysis treatment means that he spends four days of the week in hospital. A year ago he was promised home dialysis but nothing has happened yet.

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 16-18 >> Donna - Interview 25 >> Describes the 'work up' she and her donor (her mother) needed to have before her kidney transplant.

Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> He was taken into hospital as an emergency, unable to breathe. His parents were told that it was time for him to die.

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 >> Men 16-18 >> Hassan - Interview 30 >> His father became angry with the doctors when told that there was nothing more they could do. He insisted that his son be transferred to another hospi

Long term health conditions >> Men 16-18 >> James - Interview 21 >> After his kidney transplant surgery he had lots of tubes and lines attached to different parts of his body. Unfortunately the transplant failed.

Long term health conditions >> Men 16-18 >> James - Interview 21 >> Had emergency surgery but then got an infection called peritonitis which made him feel very ill and in terrible pain.

Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Describes the plastic surgery she has had, and will have, for her rare skin condition.

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 >> Mica - Interview 16 >> She had a very supportive helper in secondary school who would get her to the doctors if she had a sickle cell attack.

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 19-23 >> William - Interview 22 >> On those occasions he has been in hospital his mother and other relatives have approached the school asking for coursework. Despite reassurances they

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 >> Helene - Interview 04 >> At the age of 11 started to attend a private secondary school and despite spending time in hospital was always given help catching up with her school

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 >> Men 19-23 >> David - Interview 08 >> Early on he decided that as a young disabled person he would need all the qualifications he could get to have a better chance of getting a job.

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 >> Donna - Interview 25 >> Talks about the friends she made while having dialysis and how her friends from school were sometimes able to travel to see her in hospital.

Long term health conditions >> Women 19-23 >> Helene - Interview 04 >> Her mum has never let her go to hospital by herself and has always taken her sister along too.

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.

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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