Article, Huntington Disease, Mental Health, Rare Disease
As I sat down in the plush green chair across from my therapist, I knew we were going to spend much of the day’s session talking about the stresses of being a caregiver. I didn’t want to talk about endless hours I dedicate to my dad’s care, but my frustration that few...
Article, Huntington Disease, Mental Health, Rare Disease
It’s been a week since the news broke of UniQure’s trial successfully slowing the progression of HD, and I still find myself breaking down in tears. I have been going about my life, doing the groceries, going to the gym, cleaning the house…and the tears keep coming...
Article, Huntington Disease, Mental Health, Rare Disease
I recently attended a medical conference for the Huntington’s disease (HD) community. Hundreds of people were gathered to collaborate, share knowledge, and learn how to better address the needs of their patients. During the first session, I found it challenging to...
Article, Huntington Disease, Infertility
When I rolled out of bed that Saturday morning my entire body was aching. A line of bruises ran along my swollen stomach and I felt dizzy for some reason. This must be a weird side effect from the medication, I thought to myself. Even though I only had thirty minutes...
Article, Huntington Disease, Mental Health, Positive Living
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...
Article, Huntington Disease, Positive Living, Rare Disease
As you may know I own a publishing company called Lemonade Press – a publishing company focused on empowering people from underrepresented communities through storytelling. My latest book is called Positively Rare and I had the honour of writing about the book...
