Share your story

There may be times you might feel like you’re the only person living with Huntington’s disease. Or that no one else has had to go through the things you’ve experienced.

But having worked with families for over 30 years, we know you’re not alone.

There are other people who have had similar feelings and experiences.

Can you use yours to help others?

By sharing your story and experiences, you can directly help people who are contacting the HDA in a time of need.

You can also help people who haven’t heard of Huntington’s to get a better understanding of what it’s like to live with the disease.

To find out how to take part please email [email protected]

Take a look at some of the stories shared by others

Anna's story

Anna found out in her 30's that Huntingtons disease was present in her family. She discovered she had inherited the gene in 2014.

Clare's story

Clare's dad was diagnosed with Huntington’s just after her 25th birthday. He struggled with the disease for a further 14 years and died just after her 39th birthday.

Margaret's story

Margaret cared for her 2 brothers with Huntington's disease and now is involved with HDA to start fundraising and raise awareness of Huntington's.

Mark's story

Mark is 30 years old and about a year ago was diagnosed with having the defective Huntington’s gene.