An Introduction to Me and Huntington's Disease

 Hello and Welcome to HD - It's Not High Def Anymore!

The Test Result That Changed My Life

 

My name is Christian and on May 4, 2022 I was was told the above result by a medical genetcist from the Children's Hospital of Eastern Ontario - I inherited a genetic mutation. This genetic mutation causes Huntington's Disease. This horrible disease is prevalent in my family - my grandfather and mother both passed from it. 

When asked to describe what Huntington's Disease is, the first words that often pop into my head are "the worst disease you've never heard of". Huntington's is a rare, terminal, neurodegenerative disorder that is often referred to as having ALS, Alzheimer's Disease, Parkinson's and Schizophrenia simultaneously. It's an autosomal dominant genetic disorder - that's just a fancy science-y way of saying that Huntington's is caused by a genetic mutation. Autosomal dominant just refers to the way the genetic mutation is passed down, each child of a parent that has the mutation has a fifty-fifty chance of having the mutation as well. I'll go more in depth regarding HD in my next post. 

I decided to create this blog for a few reasons. Growing up and even currently, I always had to explain what Huntington's was. It was like no one knew what it was! I felt (and still feel) like it's my duty to teach every one about Huntington's Disease and how brutal of a disease it is. As well, I have always wanted to write a book about my experiences knowing I will eventually develop symptoms of a horrific disease. I feel like this is the best first step. I can write when and what ever I would like about Huntington's, and I would be able share those thoughts instantly on a large scale. Maybe one day, I could group all these posts together into a book.

My main goal with this blog is mainly to bring awareness. There could be people who are experiencing similar situations and reading how someone else processed those situations may help. There may be someone who might just be curious about Huntington's. There might be someone who knows nothing about Huntington's but then learns about it when they come along this blog online. No matter what, I just want to help shine a light on Huntington's Disease.

Whether it's just a question, or you have your own thoughts to share, I made it so anyone can comment on blog articles that I publish on here. Hit me with whatever questions or thoughts you have about Huntington's Disease and I'll try my best to help.

 Thank you so much for reading!
Christian