Long term health conditions

Helene - Interview 04

Female
Age at interview: 23

Brief outline: 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.

Background: Helene lives with her mother and her sister. Finished her A-levels and now works as a beautician. Ethnic background/nationality' African.

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Helene is 23 years old and has had lived with her sickle cell condition all her life. Her grandfather on her mother's side of the family had the same condition. Helene lives with her mother and her sister.

She remembers that as a child she used to be rather shy and used to spend weeks at a time in hospital missing lots of school, so it wasn't easy for her to make friends with other children. As she grew older her mother was able to look after her at home rather than going to hospital everytime she wasn't well. 

Regarding her schooling, she considers herself lucky because at the age of eleven she started to attend a small private school and her teachers gave her the individual attention she needed to catch up with school work. Her school was next to the hospital so her school friends used to go and visit her at lunchtime.

She explains that when she gets ill she feels quite tired, dehydrated and experiences pain in her joints (e.g. in her elbows, knees, etc). Sometimes she needs to put her arm in a sling and if the pain is more extreme she is unable to walk and has to be in bed for about two weeks or until her pain diminishes. Sometimes she can stay at home but at other times she has to go to hospital where they give her morphine injections to control the pain. The most important things she needs to do to prevent getting ill is to keep warm, have plenty of rest, and avoid getting a cold.

She says that the most important person who has helped her to understand and control her condition is her mother. Her mother has taught her not to let sickle cell condition limit or rule her life. She does dancing and acting, both things that she loves. Nonetheless, she admits that she can get 'down' during those times when she is ill and in severe pain and that it takes her time to get back on track. 

She finds that doctors are not, on the whole, very good listeners and advises them to be more compassionate and try and understand that if a person has lived with their sickle cell condition every moment of their life, the doctor may not understand all the intricacies of what this is like. Regarding her treatment she is given penicillin and folic acid to take everyday.

Says that she has learned from experience to take care of herself and has no problem in cancelling a social activity, like going out at night, if she is not feeling very well or if she has to work or has a dancing session next day. 

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