www.humanrights.gov.au/.../Sub0

 

 

Living with sickle cell disease

 

I interviewed a friend of mine, GM, who has sickle cell disease (HbSC). We thought his experience might be of interest to the inquiry because there are probably not many people with sickle cell in Australia but it could become more common with a larger African born population. Sickle cell is more common in people of African background.

 

Sickle cell is a genetic condition and one of G's children, J, aged 9, also has it and has been in hospital with it several times. He's an outpatient of Prince of Wales Children's Hospital.

 

Neither of them knows anyone else in Australia with sickle cell. G said he would like to meet other people if he had time, just to talk about it and compare experience.

 

“It depends if I have a time.. It would be good, we could talk about it, because sickle  - has different type of pain, in different places where it starts from.”

 

G is a Ghanaian who came to Australia in the 1980s. He has been receiving treatment for sickle cell through RPA since the late 1990s, when he was hospitalised with a severe sickle cell crisis and afterwards suffered a series of complications related to the condition. He is currently on disability support pension because he has chronic pain due to sickle cell related bone damage and he also has some problems with his vision. His wife is the breadwinner.

 

I asked him about his experiences of the hospital system and they were mostly positive but he did make a few points about it: