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#MyMayMessage – Kyla Seville

Hey everyone!! With May being Huntington’s disease awareness month, I thought it would be a lovely idea to share other people’s story!!

So today were kicking off the guest stories with the very positive and inspirational Kyla !!

I have known HD my entire life. As a child, my memories of visiting my grandfather are all of him jerking around uncontrollably and never really able to speak. This was normal to us; we knew he was different from everyone else, but it was just pap. It wasn’t until he was diagnosed in 1993 that we knew what it was.

Then father began showing symptoms in his late 30’s and finally was tested around the age of 43.  Almost exactly 10 years later he went into nursing home care and is in the later stages now at 58.  

One of the most gut wrenching experiences of my life was when he was hospitalized for 4 months while he waited for some place to accept him. He would literally beg us to bring him home. It was so sad.

I am 35 and just received my results this past November and they are positive with a CAG repeat of 42. Although I felt deep down that I had it, there are no words for the feelings that come along after knowing with certainty. I am glad that I have answers for everything I am experiencing but every day is a struggle- some easier than others.  I deal with it day by day and try not to focus on the big picture. I have amazing friend and family support, and if I need to cry or scream, I do it(in private of course 🙂 A great thing that has come from it is the network of friends(in the Huntington’s community) I have made literally all over the world via social media. 

I remain active, go to the gym, and do yoga, anything to help keep my arm strength. And I take fish oil, Resveretrol, and Ashwagandha supplements that are working beautifully, especially the Ashwagandha for my brain fog and anxiety. It is really making a difference.

Thank you Kyla for sharing your HD story! It is incredibly encouraging if you would like to share your story please email:

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