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Lisa’s Story

Lisa was diagnosed with Huntington’s disease when she was 30.

I only found out I had HD five years ago. It runs in my dad’s family, but he was adopted, so there are no other cases of it in the wider family, so it came as a real shock.

I didn’t have any contact with my dad since I was 18, so didn’t even know about him being ill. We got a phone call from the hospital on a Saturday afternoon to say that he had been diagnosed and that Brian from the genetics department at Glasgow Southern General would be coming out to see us.

I’d never even heard of HD and he said not to look it up on the internet as there was so much false information out there.

As soon as I found out I had a chance of having HD I wanted to be tested. That’s the type of person I am. I know it’s personal choice but I thought if I did have it I wanted to know what I was fighting against.

At the moment my symptoms are anxiety and depression I had struggled to get out of the house for about 18 months. But once the hospital put me in touch with the SHA, who put me in touch with a counsellor things have really improved. Although I still have bad days I know they will pass.

They are always there; Sally my SHA specialist will come out if I was having a small meltdown or just be on the end of the phone. I can’t praise them all enough.

Both my son and daughter have been involved in the charity’s youth project which really helps. They’ve taken part in camps and activities and just being in touch with other kids going through the same experience really helps. They are currently helping my daughter prepare for her test.

We need more funding though, the support that I enjoy from the SHA can’t be provided without funding. Everyone who has HD should have the support I have, but I know from talking to others this is not the case.

We need to be open and tell everyone about this disease. If people don’t know about HD we won’t be able to explain why we need more money and the difference the support we enjoy can make to families living with the condition.’

 

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