Empowering others with Huntington’s through storytelling

Erin Paterson holds copies of her books. (Photo courtesy of Erin Paterson)

This is Erin Paterson’s story:

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.

That’s what inspired me to write a book. I knew other people from the HD community also live in secrecy and fear. I thought sharing my story would help others. When my first book, “All Good Things,” was released, something unexpected happened: I felt an overwhelming sense of relief at not having to hide anymore.

It was such a freeing experience that I wanted to help other people from the HD community feel that way by sharing their stories. I gathered together 26 people from nine countries to take part in my second book. I worked with them one-on-one, and coached them through the storytelling process. Each person who joined the project had gone through something they wanted to share because they didn’t want others to suffer the way they had, or they’d learned something they thought would be valuable to others.

The book, “Huntington’s Disease Heroes,” was embraced by the community. It’s now been read by HD family members, medical students, clinicians, and scientists who are working on a cure.

With the success of that book, I decided to keep going. I knew I wanted to use my skills to help other communities. I founded Lemonade Press, a publishing company focused on helping people from underrepresented communities share their stories in empowering books that will inspire others.

My latest book, “Positively Rare,” brings together 21 people living with rare diseases. Many who shared their stories have never met another person with a rare disease.

The wonderful thing about working on these books is that I am constantly surrounded by loving people motivated by the desire to help others. What could be more beautiful than that? Together we are creating community and doing our part to make a difference in the world.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.