Staccy’s Story

Twenty nine year old Staccy was diagnosed with Huntington’s disease in 2011.

My Huntington’s disease comes from my grandfather’s side of the family, who passed it on to my mum and then on to me.

I was 19, I was rushed into hospital for a gene test when I was pregnant with my first daughter. I knew I was at risk because I had watched my grandfather die from it and how it had affected my mother.

My mum was in denial about having the disease and if I wasn’t in care when I was teenager and got put in touch with the SHA youth project, I wouldn’t have known anything, she wanted to keep it hidden from everyone.

It turned out I had a very high CAG count and I was likely to become symptomatic quite early. I thought that meant maybe in my 40s, but three years later I started showing symptoms.

My youngest daughter had just been born, my other son was just 18 months and my oldest wasn’t even three. I was so angry, not angry because I HD, I had accepted that, it was my age, I had only three years to get used to this.

My grandfather had it for 27 years and it was horrible. He died in the 90s so the standard of care that was available was nothing like it is today.  He was really bad in the last five years, that’s what sticks in my head.

My family put it out of sight out of mind. A lot of my family were put into asylums because their behaviour was anti social. People didn’t have the understanding that they have today.

Mum is now in assisted living. She deals with it by closing herself off.

I’m exactly the opposite; I don’t see any point in hiding this away. I’ll talk to anyone about it. I’m trying to be as open as I can about HD, the more people know the greater the understanding will be. People will see the impact it has on families and maybe more will be done to fund research.

Everyone should have the support network that I have. It’s not just medical it’s emotional. My HD specialist, my doctor, my geneticist they are all there providing a framework of support.

Gillian my SHA specialist is at the centre of this, it’s not like I’m her client with HD, it’s just like I’m talking to one of my pals. She is warm and nurturing and she just listens, nothing is too much of an issue. She phones and checks on me, she’s really critical. I’m really lucky to have the support of Gillian and the SHA, everyone who has HD should have the support I have.

I don’t care what people think, I want to tell people because that’s the only way we will increase understanding.

If anyone looks at me funny or questions me I’ll tell them direct, I have a brain illness called Huntington’s disease and this is what it is.

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