Subject index

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Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> She now knows more about how to control pain. Her mother has played a pivotal role in helping her to keep active and not to dwell on her pain in times

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 >> Helene - Interview 04 >> Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

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 >> 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

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> She drank a lot of vodka which triggered a sickle cell crisis. She still remembers the pain and says that after that she can't stand alcohol.

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Says that she has wised up and advises other young people to understand that if they smoke or drink alcohol they will get more sickle cell crises than

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.

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

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Tell young people everything they need to know about sickle cell.

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

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 19-23 >> Helene - Interview 04 >> She does not feel her sickle cell disease limits her from going out but she avoids going clubbing too often. Says her friends understand.

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 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 >> Originally learnt about sickle cell disease from her mother. She has looked for information on the internet but was upset to find negative information

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Her sickle cell support group has an adult and a youth section. They learn about the disease and she gains reassurance from how normal everyone in the

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

Long term health conditions >> Men 19-23 >> William - Interview 22 >> He says that he knows and respects his limits and when in pain, he just rests until he feels better. He hasn't had a sickle cell crisis for the last t

Long term health conditions >> Women 19-23 >> Helene - Interview 04 >> She has learnt from experience about taking care of herself. Says that when you are a teenager you are trying to be like everyone else but your body i

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 >> William - Interview 22 >> His friends treat him the same and some know what to do if he were to have a crisis. He does not talk about his condition in college because thinks ev

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Friends saw her having a crisis but didn't know about her sickle cell. She explained it to them and they are very supportive. No one has ever been unk

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 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

Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Tells other young people with sickle cell that having sickle cell doesn't make them abnormal and that, they should 'go out there' and pursue their goa

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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