Why What Is HD? Exists
For almost three decades, Huntington’s disease has been part of our family’s life.
My wife Sarah’s mum lived with Huntington’s disease, and we watched the devastating effect it had on her and on the family around her. Then Huntington’s came into our lives again when Sarah developed the disease herself.
Our two sons grew up knowing Huntington’s in a way no child should have to. First they watched their nan live with the disease. Years later, they found themselves watching their mum travel the same road, while also knowing that Huntington’s could affect their own futures.
As Sarah’s husband and full-time carer, I’ve seen what Huntington’s really means behind closed doors. It isn’t simply a list of symptoms on a medical website. It affects relationships, children, grandchildren, decisions about having a family, work, finances, caring and almost every part of everyday life.
Huntington’s doesn’t affect one person. It affects generations.
Why I started talking about it
I never set out to become a Huntington’s disease campaigner.
I started sharing our story because I was frustrated by how few people had even heard of the disease and by how difficult it was to explain what Huntington’s can do to a family.
So I began making films.
Not as a medical expert, but as a husband, dad and carer trying to show the human side of Huntington’s disease.
Those films reached far more people than I ever expected and started conversations with families, healthcare professionals and people who had never heard the letters HD before.
And that eventually led to this website.
What Is HD? is the next chapter of that journey.
Our family, our reason
Huntington’s has already touched three generations of our family. But our story isn’t only about what Huntington’s has taken. It’s also about what our family has fought to protect for the generations that come next.
What we hope this website does
If you arrived here because you’d never heard of Huntington’s disease, we hope you leave understanding it.
If Huntington’s is already part of your family, we hope you leave knowing you are not alone.
And if something you see here makes you talk about HD, share a story, watch a film or tell someone else what you’ve learned, then What Is HD? is doing exactly what it was created to do.
What Is HD was created during the quiet hours of caring for my wife, Sarah. It was inspired by her strength, by everything Huntington’s disease has asked of our family, and by the hope that sharing what we have learned may help others feel less alone. Sarah is at the heart of this website and always will be.