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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.

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 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 >> Men 16-18 >> Joseph - Interview 17 >> Had dreadful pain from his arthritis that would leave him feeling exhausted at school and frustrated not to be able to do things.

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 16-18 >> Jamie - Interview 12 >> Says that he gets breathless very easily and describes the situations that aggravate his problem.

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 >> 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 >> Men 16-18 >> Joseph - Interview 17 >> He remembers feeling different to his peers in primary and secondary schools because of his arthritis. He also felt frustrated by the pain and having

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> She used to feel different when she could not join in activities because of her sickle cell. However people do tend to be kind and helpful towards her

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 >> He felt excluded and lonely when he was having treatment at boarding school and eventually became so depressed that he thought of stopping his dialysi

Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She felt depressed for much of secondary school but has now learnt to focus on a series of goals and feels much more positive.

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 >> Men 16-18 >> James - Interview 21 >> He is not allowed to do any contact sports or go swimming. Under the supervision of his PE teacher he is allowed to go to the school gym and do some v

Long term health conditions >> Men 16-18 >> Jamie - Interview 12 >> He thinks that it is not fair on him to be unable to play football at school. He does some footie in the garden with his sister and friend but that's

Long term health conditions >> Women 19-23 >> Lynsey - Interview 14 >> Her primary school accommodated all her needs and made sure she was included. At secondary school some people teased her for taking drugs, which was h

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 >> 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.

Long term health conditions >> Men 16-18 >> Joseph - Interview 17 >> After his diagnosis he went back to school in a wheelchair. The school and classmates were supportive but he thought he was now known as 'the one with

Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> Talks about his primary school experience in Pakistan, his brother's experience in Britain and his mother's efforts to find a secondary school place f

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 >> Women 16-18 >> Sarah - Interview 29 >> Her condition affects her facial features and when she moved schools some classmates bullied her but with the support of her mother and new friends sh

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 >> Men 19-23 >> Rollo - Interview 11 >> When feeling ill he becomes emotional and tends to cry. His fellow students at his all male school found this 'weird'.

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 19-23 >> Elizabeth - Interview 01 >> She has a few ideas about how schools could help young people with chronic conditions not to miss their education. Thinks that it is a good idea for n

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 19-23 >> Sara - Interview 27 >> Because she had so many physical problems she was off school for a year and a half. She has memories of her school life before she was diagnosed with

Long term health conditions >> Women 16-18 >> Donna - Interview 25 >> Wasn't able to do her GCSE exams but she was graded according to her coursework. She then went on to have a kidney transplant and has had to delay fin

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 >> 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.

Topic
Long term health conditions >> School life >> School life

School Life

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

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

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 :

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Advice to others :