Living with Huntington's disease as a family
My name is Steve, and this is our family.
Huntington’s disease has been part of our lives for many years. My wife, Sarah, inherited HD from her mum, and as the disease has progressed, it has affected every part of our family, our marriage, our children, our grandchildren and the decisions we have had to make about the future.
I’m not a doctor or a Huntington’s disease expert. I’m a husband, a dad and a full-time carer who has watched someone I love gradually change because of this cruel disease.
This is our Huntington’s disease story, not to frighten people, but to show the real human lives behind the medical words.
Where our HD journey began
Our journey with Huntington’s disease began long before Sarah became ill herself.
Sarah’s mum lived with Huntington’s disease for around 12 years. As a family, we watched the disease gradually change her and saw first-hand what HD could do. But Huntington’s doesn’t end with the person who has the disease. Because it is inherited, its shadow reaches into the next generation too.
Sarah knew that she was at risk of inheriting the faulty Huntington’s gene from her mum. And with that knowledge came something that is incredibly difficult to live with, knowing that the same disease you have watched affect someone you love could one day become part of your own life.
Eventually, Huntington’s became our reality too.
Sarah developed the disease, and over the years we have watched it affect her movement, speech, swallowing, independence and ability to do the everyday things most of us take for granted.
But Sarah’s diagnosis didn’t just affect Sarah and me. Our two sons, Jake and Charlie, were now each faced with a 50% chance of having inherited the Huntington’s gene themselves.
That is one of the cruelest things about Huntington’s disease. It doesn’t simply affect one person. It can travel through generations of an entire family.
When Huntington’s Reaches the Next Generation
One of the hardest realities of Huntington’s disease is knowing that it can be passed from parent to child.
Because Sarah has Huntington’s, each of our sons, Jake and Charlie, has a 50% chance of having inherited the faulty gene. It is a statistic that sounds simple on paper, but when it is your children, 50% feels very different.
As parents, you want to protect your children. Yet this was something we couldn’t protect them from. They grew up knowing what Huntington’s had done to their nan, and later began watching their own mum follow the same path.
And then came another generation.
Our sons had to think about something most young people never have to consider: if they carried the Huntington’s gene, there was a chance they could pass it on to their own children.
But our family was determined that, wherever possible, Huntington’s would not continue into another generation.
Today, our grandchildren Ruby and Beau are both free from Huntington’s disease. Their journeys were very different, involving prenatal testing and IVF with genetic testing, but they represent something incredibly important to our family:
Huntington’s has shaped our past and our present, but it doesn’t have to shape their future.
Living With Huntington’s Disease Today
Today, Huntington’s disease is part of almost every aspect of our daily life.
As Sarah’s condition has progressed, she has gradually lost many of the things most of us take for granted. Her speech, movement, swallowing and independence have all been affected, and she now needs constant care and support.
I am Sarah’s husband, but I am also her full-time carer. I cannot leave her alone, so our world has become much smaller. Our days revolve around keeping Sarah safe, comfortable and surrounded by the people who love her.
Sarah is now receiving palliative care as Huntington’s reaches its final stages. We don’t know what the weeks or months ahead will bring, so time together has become more precious than ever.
There are difficult days, frightening days and days when Huntington’s feels completely overwhelming. But there are still smiles, family moments and memories being made. Behind the disease, Sarah is still Sarah, my wife, a mum, a nan and somebody very deeply loved.
This is the side of Huntington’s disease that statistics and medical descriptions cannot truly explain. It affects relationships, families, carer's and everyday life.
That is why I wanted to create What Is HD? to give families like ours somewhere to tell the reality of living with Huntington’s disease, in their own words.
Why I Created What Is HD?
For years, Huntington’s disease has been something our family has lived with every single day. Yet outside the Huntington’s community, I’ve often been surprised by how little people know about it.
You can read medical descriptions of Huntington’s disease, its symptoms and genetics, but they don’t always explain what it actually feels like to live alongside it.
That is why I created What Is HD?
I wanted to build something different, a place where people can understand Huntington’s disease in clear, everyday language, but also meet the real people and families behind the diagnosis.
Through our family’s story, the stories of others, awareness films such as I Am HD, and honest conversations about caring, inheritance and family life, I hope we can help more people understand what Huntington’s disease really means.
This website isn’t about our family alone.
It’s about every family affected by Huntington’s disease having a voice, being seen and knowing they are not alone.
Share Your Huntington’s Story
Every Huntington’s disease family has a different story. Yours matters too.
Whether you are living with HD, at risk of inheriting the gene, caring for someone you love, or have experienced Huntington’s disease within your family, we’d like to hear from you.
Share as much or as little as you feel comfortable with. You can also include a family photograph if you wish, or even a link to a video.
Your story will never be published without being reviewed first.
Every Huntington's Family has a story.
Different families, Different Journeys. One disease that touches generations.