Event: Wing Walk

Date: 22 May 2021 (cancelled due to bad weather and rearranged to 30 May 2021 and then to 29 May 2021)

Location: Selby, York

Charity: Huntington’s Disease Association (HDA)

May is Huntington’s disease awareness month

                         My Story

I am doing a wing walk to raise awareness and support for Huntington’s disease and the HDA, a disease and charity which have recently become a big part of my life.

I found out in September last year at 33 years old that Huntington’s disease runs in my family. The odds of me having inherited the disease was 50:50. After careful consideration, I underwent a process of genetic counselling and testing. I was told on 01 February this year that I had inherited the genetic mutation associated with the disease, though I am currently asymptomatic. I am now living with uncertainty as to when my symptoms will begin. 

The results have been devastating and life-changing, but I am strong, and I am determined that it will not stop me from living my best life for as long as possible. 

I have already used the services of the HDA, by taking part in virtual events to learn about the disease and to get support from others in a similar position to me. I know that going forward the HDA are going to be invaluable to me and my family, as we battle this disease together. 

What is Huntington’s disease?

Huntington's disease is a condition that stops parts of the brain working properly over time. It is a severe, invariably fatal, inherited neurodegenerative brain disorder. It is a rare disease and is caused by an increase in the number of ‘CAG’ repeats in the DNA of the huntingtin gene. The symptoms usually start at 30 to 50 years of age, but can begin much earlier or later. It gets gradually worse over time and is usually fatal after a period of up to 20 years. There is currently no cure for Huntington's disease or any way to stop it getting worse, but treatment and support can help reduce some of the problems it causes.

Who are the Huntington’s Disease Association?

The Huntington's Disease Association supports anyone who is affected by Huntington's disease across England and Wales. They pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.