The Rare Spotlight: Erin Paterson on telling the world about Huntington’s

Jan 5, 2024

This week’s blog was written by Erin Paterson, patient advocate and founder of Lemonade Press. Her lived experience with Huntington’s Disease has driven Erin to empower others.

I kept my diagnosis as gene positive for Huntington’s disease a secret for over ten years because I was afraid of how people might react.

I thought I would lose my job, I didn’t think people would want to be friends with me any more.  I was terrified of ending up alone and unloved for the rest of my life.

I didn’t see my value as a human being if I was going to end up suffering from this disease and becoming a burden to those I loved.

 I completely lost my self confidence and I fell into a deep depression. I struggled to function in my daily life. Everything from getting out of bed in the morning, to doing the laundry or simply answering the phone, was too hard. 

But, there was one thing I knew, I didn’t want to feel this way forever.

Photo of Erin Paterson

Even though I had no idea if it was possible, I made it my mission to find happiness again.

Through a ton hard work, which included attending support group meetings, going to therapy, and a lot of self reflection, I finally came to a place in my life where I was accepting of my future with Huntington’s disease.

It was at that point that I decided I was not going to continue living in secrecy and fear because doing so made me feel shameful. I didn’t have anything to be ashamed of!

I knew I wanted to live an open and honest life, so I started being more public about my diagnosis. It was terrifying to share that part of my life with people, but all the bad things I thought would happen never did. That was one of the best decisions I ever made.

Erin with her published book, 'Huntington's Disease Heroes'

Now I am a published author, speaker and Huntington’s disease advocate. I am actively involved in the Huntington’s community, and I am proud to be sharing my story and raising awareness of the disease.

This year I curated a book of stories written by people from the Huntington’s community called ‘Huntington’s Disease Heroes’.

The book is being read by scientists, doctors, medical students, families, care givers, and staff from drug companies.

This book not only allowed 25 people to share their HD stories, it has given a voice to the Huntington’s community.

I am having an impact and making a difference in other people’s lives, and that feels good.

I am currently working on my next book which is going to shine a light on 25 different rare diseases. I know that there are many diseases that are even more rare than Huntington’s.

If there is anything I can do to help lift fellow rare disease community members, I am happy to help.

Thank you, Erin for sharing your guest blog with us. We hope you enjoyed reading it!

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