1. What's your name and age?
Erin Paterson, 46
2. Where are you from?
Toronto Ontario Canada
3. When were you diagnosed with Huntington's Disease?
I was diagnosed as gene-positive for HD in 2007, at the age of 32
4. Which one of your parents has/had HD?
My father has HD
5. How much does your family (sisters, brothers, aunts, uncles, cousins, etc.) understand about Huntington's Disease?
We don't have much-lived experience with HD. My grandmother had HD, but nobody knew what it was at the time. We are just learning about it as we go along. In my family, HD was something people didn't really want to talk about at all. But I find now that my dad's symptoms are getting more noticeable; they are starting to communicate with each other a little more.
6. Why did you decide to get tested?
One Sunday morning over brunch, my husband and I made the announcement that we were going to have kids. We thought my parents would be excited to become grandparents, but they didn't seem to be. A few days later, my parents told us about the possibility that HD ran in our family. It felt so important at the time to find out if I had the HD gene or not so that I could make an informed decision about having kids. I thought if I tested positive, I would not have kids. Since my biological clock was ticking, I ended up deciding to get tested and I found out my results within a short 8 months. After I tested gene-positive, I struggled with the decision to have kids. In the end, we decided that my life had value as a person who was going to get HD, and so would the life of our child if they happened to inherit it from me.
7. What was the testing process like for you?
I didn't have any trouble accessing testing at all. I got a referral from my family doctor to a genetics clinic at a local hospital. I had to wait a few months for my first appointment, at which I told them I wanted to get tested. My blood was drawn that day, and then I had to wait about seven weeks for my results. Even though this felt like a really long time to wait, in hindsight, it was pretty quick.
8. Did you have family or friends there with you when you received your results?
Nobody in my family knew that I was getting tested. Only my husband and a handful of close friends were aware of what was going on. My husband came with me to my results appointment. He was sitting next to me, holding my hand under the table, when the genetics counselor read me my test results.
9. How did you cope after receiving your results?
After receiving my gene-positive diagnosis, I fell into a deep depression. I didn't know how to move on with my life. I didn't understand how it would ever be possible to be happy again. In the early days after my diagnosis, I did whatever I could to avoid being by myself. It was when I was alone that my mind would start racing, and I would begin to freak out. I went to work every day, but I could hardly function. I went running with friends 5 or 6 times a week. I slept 10 hours or more every night. I did anything I could to stop myself from thinking about HD. Luckily I had the support of my husband and a handful of friends who knew what was going on. It was one of the most difficult times of my life, but I told myself, "I am not going to let this ruin my life. I am going to find happiness again." I didn't know how or if it was even possible to be happy again, but that is what I set out to do.
10. Have you enrolled/thought about enrolling in a clinical trial?
A few years ago, I joined enroll HD. That is one of the only trials I am eligible for at the moment as I am pre-symptomatic.
11. Do you have any children? If not, do you plan to have any children? If yes, how much do your children know about Huntington's disease?
My husband and I tried to conceive naturally without any luck. We then ended up going through years of fertility treatments with the help of a fertility doctor. We tried procedures that were as minimally invasive as possible but eventually after we had tried everything else, we ended up doing IVF with PGD. Unfortunately, nothing, including the IVF's, worked for us. After five and a half years, we finally created our family through adoption. We brought our daughter home when she was ten days old. It was one of the happiest and scariest moments of my life. Our daughter is now nine years old. She knows about HD because her grandfather is symptomatic. I recently told her about my gene-positive status and explained that I would get HD one day too. We always try to talk about HD positively so she will feel empowered to handle anything that comes up, but we also let her see that being a caregiver can be hard. I think it is important to show a balance.
12. Are you a part of any support groups online or in your local community?
When I was first diagnosed, I went to a few HD support groups, including one for people who were recently diagnosed and a caregivers support group. I also saw a therapist every two weeks for several years. Going through counseling/therapy was pivotal for me; it helped me come to terms with my future with HD. I am not currently a part of any support groups, but I am looking for one because I am finding it hard to watch my dad's symptoms get worse, and I don't know what to do to help him. I know others in the HD community will have some good advice for me.
13. What have you found in your life that helps you get through each day?
It is finding activities that allow me to live in the moment. For me playing sports has always helped get my mind off things; reading books about other people's experiences with hardship. It doesn't have to be a book about HD; it can be a book about someone overcoming a challenge. I always find I learn something from other people's stories. Michael J Fox was a huge inspiration for me. Learning to shift my mindset by eliminating negative thoughts and coming up with positive affirmations has been very helpful. If something is bothering me, I really take a hard look at what it is and try to analyze why it is making me anxious. Often times I can talk it out with my husband and come to a conclusion about it, other times, I tell myself I have to just set it aside for now. Writing has been very cathartic. I have written a book about everything I have gone through called All Good Things: A Memoir About Genetic Testing Infertility and One Woman's Relentless Search for Happiness. The process of writing the book and releasing the story out into the world has allowed me to let go of a lot of the pain I was carrying.
14. How much did you know about Huntington's Disease before you got tested?
I didn't have any lived experience with HD. All I knew was what I could read on the internet. But reading a list of symptoms was not really helpful. I didn't understand what it meant to have cognitive impairment or chorea. When I was making the decision to get tested, it almost felt like a theoretical exercise.
15. What is your biggest strength?
I am a very emotional person, which I grew up thinking was a bad thing. But now I see that it is a huge asset for me as a writer and storyteller. I feel things very deeply, and when I express those feelings in a story or a blog, I am able to make a connection with the reader.
16. What is your biggest struggle?
It can be really hard not to let HD be your every thought. It can be difficult to find a balance in life. Especially as my dad's symptoms are getting worse and I am doing more for him. It is so hard for me to help him know that is what my future holds.
17. If you could go back in time and talk to your younger self, what would you say to young you?
There is no wrong decision when it comes to having kids. Whether you chose natural conception, IVF or living child-free etc.… You are making the best decision you can with the information you have available to you right now. Stop trying to control everything because it is not possible.
18. How do you describe Huntington's Disease to people?
I tell them it is a neurological disorder that causes emotional issues, uncontrolled movements, and memory problems—kind of like a mix of ALS, Alzheimer's, and Parkinson's.
19. How has knowing you have HD changed your life?
HD has changed my life for the better. It has allowed me to see what is really important and to live a life with purpose. A part of that purpose is raising my wonderful daughter, but it is also about being an HD activist and sharing my story with people. I want to positively impact other people's lives by writing and speaking about genetic disease, depression, and infertility. I want to show people that it is possible to live a meaningful life even when faced with unexpected obstacles. Especially those in the HD community because I sometimes know HD is something that is secretive and hidden, and it can be hard to find positive stories about it.
20. If you had the world's attention for 15 seconds, what would you say?
I love this question! We are making huge advances in science. Often times those advances can have unforeseen effects on people's lives. I think it is so important to consider what those things might be and how we can support people experiencing them. Even taking a mail-in genetics test, the kind you see on tv, can reveal information you were not prepared for. When I was diagnosed as gene-positive for HD, I didn't understand why I felt so horrible when I didn't even have the disease yet. It was only through counseling that I learned that I was grieving the future I had always imagined for myself. It is so important to consider the human/emotional side of genetic testing.
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