I attended a conference for families impacted by Huntington’s disease (HD) — a spectacular event with expert panels and motivational speeches. But it’s the hugs and the feeling of being loved that I remember the most. There’s nothing like having a room full of people to listen, embrace your trauma, and support you. I am so lucky to be a member of this beautiful community, I only wish I had become part of it sooner.
I didn’t know anyone from the community when I was diagnosed as gene-positive for HD. That means it’s 100% certain I will develop the disease, I just don’t know when. Trying to come to terms with my future, I fell into a deep, long-lasting depression. I thought I was going to become a burden to others when I got sick, and I lost all self-esteem. I kept my diagnosis a secret, feeling like I didn’t fit into society anymore. It took me about 10 years to get back on track and to accept that my life has value even when I start having symptoms. But I’ll never forget how it felt to go through that.
Published on Huntington’sDiseaseNews.com
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