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Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to upset her mum but found talking to others with CF rea

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 >> Women 19-23 >> Sophie - Interview 15 >> She was feeling healthy but started to cough blood. Her doctors decided to conduct a procedure called bronchial artery embolisation.

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.

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

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 >> He was taken into hospital as an emergency, unable to breathe. His parents were told that it was time for him to die.

Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Until she was 13 she did not think that plastic surgery would be possible. She found out that it was when she saw a specialist in London.

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 19-23 >> Sophie - Interview 15 >> When she was 14 her doctor explained that women with CF could have children. Feels she was a little young for this conversation but was glad to know a

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

Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> Has not wanted to attend a support group. Really appreciated the care given by a trainee at the hospital and her GP.

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'.

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

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 19-23 >> Helene - Interview 04 >> Being on an adult ward was like being put in 'an old people's home'. She says that staff do not always listen to her and she would like to see special

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 >> William - Interview 22 >> Children's wards feel safer and nurses are more supportive than in adult wards. His bed, in an adult ward, was next to someone he felt very uncomforta

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 >> Sarah - Interview 29 >> Until she was 13 she did not think that plastic surgery would be possible. She found out that it was when she saw a specialist in London.

Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> After a year of hospital treatment they found out that they could reclaim some expenses. She was turned down for other benefits because she was above

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).

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

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

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 >> 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.

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.

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.

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 >> 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.

Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

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

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

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.

Surgery and hospital treatments

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