All Good Things
Author Erin Paterson talks about Huntington’s Disease, family planning, and the healing power of sharing your story.
By Gina DeMillo Wagner
Erin Paterson had no idea that rare disease ran in her family until she was 31 years old. That was the year she and her husband decided they wanted to have children. When Erin shared this news with her family, they didn’t share in her excitement. It turned out, they’d been holding onto a family secret that could impact Erin and future generations. They told Erin that her grandmother had passed away from what they suspected was Huntington’s Disease (HD), a rare inherited condition that causes nerve cells in the brain to break down over time.
“They didn’t know for sure what she had, because she passed away before the gene was discovered,” Erin recalls. “I was already trying to conceive, so for me it felt urgent to get answers.”
Erin decided to undergo genetic testing. She didn’t tell anyone in her family, though, because she knew if she tested positive, that would mean that her father was also gene positive for HD. “I didn’t want to force him to go into testing if he wasn’t ready for that. What I didn’t know was that he was actually going through the testing process at the same time as me, but he just didn’t tell me,” Erin says.
Soon, Erin received the news she feared. She was gene positive. “With Huntington’s Disease, when you test gene positive, it doesn’t mean you’re symptomatic. It just means that you have enough repeats in that gene that it’s 100 percent certain you are going to get the disease at some point in your life; you just don’t know when the symptoms are going to start.”
“Don’t put so much pressure on yourself to try to control everything and make it perfect, because it’s never going to be perfect.”
Family Planning
The diagnosis cast a shadow on Erin’s dream of becoming a mother. “We asked ourselves: is it morally correct to have kids? Can we live with the guilt of potentially passing on this disease?” Erin remembers. “And at the same time I was trying to come to terms with the fact that my future included this disease.”
After a lot of thought, Erin and her husband decided to move forward with trying to conceive. But they decided to keep the decision private, as not to invite differing opinions from others. “I always knew I was meant to be a mom. When you’ve planned your entire life to be that way, it’s hard to just stop and abandon that dream. Another reason I wanted to move forward is because I thought, how can I be accepting of myself with HD if I’m not accepting of my future child with HD?”
Yet, after more than a year of trying, it became clear that they were not able to conceive naturally. This led the couple down a path that included fertility doctors and eventually, IVF. “At that point, I thought, well if we’re interfering with mother nature this much, I want to take that extra step to see if I can protect my child from getting HD. So we decided to do the genetic testing as well,” Erin says. “That was back in 2007 when it was considered experimental and it wasn’t available in Canada, so we had to have cells from our embryo shipped to the United States for testing.” After the first round of IVF, all the embryos tested positive for HD. During the second round, two embryos were HD-free, but neither resulted in a pregnancy.
“It’s a giant rollercoaster ride every single month,” Erin remembers. “You get your hopes up only to have them crushed, and three days later you have to go back into the clinic to start the process all over again.”
Eventually, they decided they would try to adopt, a process that brought its own heartache and stress. Erin wasn’t sure if she was eligible to adopt with her gene status or, if she was, whether a birth mother would ever place a baby with someone who has a rare disease. Luckily, in 2012, Erin and her husband got the call. They’d been chosen to adopt a baby girl who had been born the day before. After years of longing and trying, Erin finally fulfilled her dream of motherhood.
“Now that I’m ten years out from the experience, I’ve realized that there is no wrong way to have a child. Don’t put so much pressure on yourself to try to control everything and make it perfect, because it’s never going to be perfect.”
The In-Between Years
Erin’s now living in what many call the “in between” years, where you know you’re going to get HD but you don’t have it yet. “It’s a particularly hard place to live because most people [who don’t have Huntington’s] don’t understand why it’s hard,” Erin explains. The experience can be lonely and isolating. “After my diagnosis, I didn’t tell many people because I worried they’d stop being friends with me or stop loving me or not want to have a relationship with me. I viewed myself as defective. I knew I was going to be a burden to people one day and cause them pain.”
“Most people who test gene positive tend to get the disease in their 30s or 40s and pass away in their 50s or 60s,” Erin notes. “In my family, it seems to be late onset. My grandmother was 72 when she passed away. With my dad, in hindsight, we could see that his symptoms probably started in his mid-50s, and he just turned 80 in August 2023. He’s still living with it and is nearing end stages, but is doing pretty well all things considered.”
Erin is helping care for her father now who lives in a retirement home. In her family of origin, she’s the one everyone is leaning on for support even as she deals with her own HD journey. “It feels really unfair, but that’s the way often it is in HD families… Some families have dozens of people with HD. And even if they test gene negative, they can’t get away from it. They still have to support other family members who have the disease.”
The Healing Power of Writing
In the beginning, as Erin considered how alone she felt, she imagined other people in the world who probably felt the same way she did. “I felt I needed to share my story somehow, even though everyone in my life continued to be secretive about it. When I talked with my family, no one wanted to talk about it. …I started feeling like I was only living half a life.”
People with rare disease have nothing to be ashamed of, Erin notes. There’s no reason to live in secrecy. No one asked for this or deserves this. “So, I just decided to start being more open about it,” she says. She joined a writing group. “At first, it was completely terrifying. I was so exhausted from just putting myself out there and saying those words out loud”
But eventually, Erin became more comfortable sharing her words with others. The positive feedback and validation she received motivated her to keep going. Her first book, All Good Things, was published in 2021. “Writing was cathartic. Publishing the book brought relief,” she says. “I also wanted to have documentation of who I was so that someday my daughter could read it and know me before I got sick.”
This led to her wanting to help others share their own stories through a series of anthologies. She started a publishing business called Lemonade Press which has fostered a community of writers in the rare disease community. Her forthcoming anthology, Positively Rare, features contributors from three different countries. “I wanted to start creating a world where people are open about these things,” Erin says.
To learn more about Erin and her books, visit her website.
Have a story you might like to share in her next anthology? Visit the Lemonade Community website here.
To learn more about Huntington’s Disease, visit HDSA.org .
