Subject index

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Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> His mother suspected that something was wrong because he used to fall down a lot. The doctor (in Pakistan) dismissed her concerns and told her to have

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 19-23 >> William - Interview 22 >> He says that he doesn't need to take his medication but he prefers to take the folic acid and penicillin every day to be on the safe side and avoid si

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 >> Donna - Interview 25 >> She was angry with her body for causing her illness and went through a very down period in which she started to self-harm. Her mother, nurses and frie

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 >> Hassan - Interview 30 >> It is hard living with muscular dystrophy but he refuses to give up. He is writing a book about his life including how as a Muslim he lives with his c

Long term health conditions >> Women 19-23 >> Helene - Interview 04 >> Her mother enrolled her in dance classes. She loves her dancing and would only give it up if it made her sickle cell worse.

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 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 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 >> 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

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 >> 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 >> 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 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 >> Charlotte - Interview 10 >> She feels that her mum can be 'a bit mollycoddly' and that she worries too much about her going out.

Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.

Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> Her mother got worn out trying to cope with her CF when she was young and sometimes needed help from neighbours and family.

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 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

Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her relationship with her mother has been shaped by her experience of having ME. She didn't want to tell her mother some things because she knew it wo

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.

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

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 >> Women 16-18 >> Charlotte - Interview 10 >> She knows that parents do care but they need to be less protective and let the teenagers grow up.

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Her mum can be quite tough and makes her take exercise during attacks (she has sickle cell) but even though it hurts at the time she knows it's good f

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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