DEAR DEIDRE: ALL I want is to be normal, but I have a health condition that makes me eat compulsively and people judge me.
Doctors told my parents I wouldn’t live long, but I’m still going strong. How can I come to terms with my problems and have a good life?
I’m a 33-year-old woman with Prader-Willi Syndrome, the rare genetic condition that affects about 2000 people in the UK.
I was diagnosed as a child. It makes me constantly hungry and desperate to find food, as well as causing learning problems and weak muscles.
I’m overweight, even though I try hard to control it. People treat me like I’m greedy and lazy, but I’m not.
I still live with my parents and don’t have a job. It’s hard to make friends and I’m sick of having to explain myself to everyone.
Life is so hard. I just want to be like everyone else.
DEIDRE SAYS: Living with a rare condition is very difficult, but you’re not alone.
Contact the Prader-Willi Association (pwsa.co.uk, tel: 01332 365 676) where you can talk to someone who understands.
They’ll call you back to save you the cost of a call. They’ll advise you and can help put you in touch with other young people with your condition.
They organise events all around the UK, as well as online.
Things have got a lot better for people with Prader-Willi. According to the NHS, adults with Prader-Willi, who control their weight can now expect to live longer and healthier lives.
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