What is your name? Allyson
How old are you? I'm 58 years old.
At what age were you tested for HD? I was tested for HD in 2012 at the age of 48.
At what age did you start showing symptoms of HD? 48 years old
Which parent did you inherit HD from? I inherited the gene from my Mum.
Do any of your siblings have HD/JHD? Yes, my brother has HD, and my sister has it too.
Did you get tested because you showed symptoms or wanted to know your gene status? What was your reasoning for getting tested? I got tested because I was showing symptoms like depression, memory loss, disorganized, so then I went and got tested at 48 years old, and it came back positive with a CAG of 41
How were you feeling after receiving your results? How did you cope? I was devastated to find that I carried the gene. Then I went out on disability right away. I couldn't do my job anymore. I went to see a psychiatrist right away for depression, and I attempted suicide in 2014 & 2019.
What are the top 3 hardest things you have to deal with due to the symptoms of HD? Can't drive, can't work, memory loss.
Have you ever been arrested or questioned by law enforcement due to the symptoms of HD? No, but I lost my driver's license over HD because I was in the hospital for suicide and depression, so they revoked my license even though I was a great driver.
What is something that you love to do, which is harder to do, or can no longer do, due to HD? Used to play a lot, drive, play tennis, ski, and jet skiing. I went skydiving with my husband but can't do that anymore because of HD.
Are you employed? Occupation? I was an RN Hospice case manager and visited patients in nursing homes, assisted living facilities, and homes.
What is your biggest strength? I'm compassionate
What is your biggest struggle? Memory loss and confusion. Loss of independence. I started on Prevagen extra strength about a year ago, and it's helping me get my memory and independence back.
How much did you know about HD by the time you were tested? My Mum, Gran, and Uncle died from HD. My Mum was the first diagnosed.
Are you enrolled in any clinical trials? No, not in any clinical trials, but I want to be in the uniQure or the Branaplam one, but I can't get into it because I had breast cancer in 2020, and they told me that I need to be five years clear of cancer before I can get on the uniQure trial.
Do you have children? I have three children. One biological, and she's at-risk. It's terrible that she's at risk, and I pray she doesn't have it because she has a club foot and fibular hemimelia.
How do you describe HD to people? I say HD is terrible. It can make you look drunk, and you're not. It's worse than MS, ALS and Parkinsons put together.
What would you say if you had the world's attention for 30 seconds? That Branaplam or uniQure surgery heals HD/JHD.
What's the best advice you would give to someone battling Huntington's Disease? Pray that this medication, Branaplam is the cure or the uniQure surgery.
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