20 Questions with Help 4 HD - Domonique Link
What is your name? Domonique Link
How old are you? 31
Where are you from? Layton, Utah, currently living in Maryland
Which one of your parents has/had HD? My mother had it.
Do you have any other family members who have/had HD/JHD? Many family members on my mom's side of the family are/ have been HD-positive.
When did you get tested? Two years ago
Why did you decide to get tested? My husband and I had been discussing getting tested for years, and we wanted to be able to plan for the future without fear. Finding out if I was gene-positive was the best way to move forward.
What was the testing process like for you? There was a great deal of thought and trepidation before getting tested, and the experience itself took a long time.
Did you have family or friends there with you when you received your results? Yes, my husband was with me.
How did you cope after receiving your results? I felt, in a way, that I was discovering something about myself that I had always known. It wasn't a shock. Both my husband and I felt that I had HD long before I got the official result. Still, it is something that has changed my life-- and that of my family-- profoundly.
Have you enrolled/thought about enrolling in a clinical trial? Yes, I have enrolled in one, and I am currently contemplating another more serious one.
Do you have any children? If not, do you plan to have any children? If yes, how do you cope knowing that your children are at risk? Yes, I have two beautiful daughters, one is seven years old, and the other is three years old. Thinking about the possibility that they could have Huntington's is really hard for me. But, I am doing what I can to be part of future treatments with the hope that something can be found that will help the next generation.
Are you part of any support groups online or in your local community? Yes, my husband and I joined a support group during the pandemic, and it has been wonderful. It was really hard for me to open up and be vulnerable, but it helps to find people struggling with the same thing as you.
What have you found in your life that helps you get through each day? I have hope for something greater. I believe this life isn't the end for us. I have hope that I can be kind, loving, and positive through this trial and that my family will thrive.
How much did you know about Huntington’s Disease before you got tested? I knew a great deal about it since my mom was entering the last stages of the disease as I began my testing process. She passed away just a few months after I received my results, which only compounded my grief.
What is your biggest strength? I know that I can get back up after being knocked down. This has happened so many times in my life, and I have always been able to get up and get through it.
What is your biggest struggle? I have a lot of trauma from my past that I am desperately trying to work through to be a better wife, mother, sister, friend.
If you could go back in time and talk to your younger self, what would you say to the young you? I have so much love for my younger self. She struggled a lot and was often afraid and lonely. I wish I could tell her that everything is going to be ok and that she should go out and have more fun and not worry so much. I suppose I should tell my current self the same thing. :)
How do you describe Huntington’s Disease to people? It's like having ALS, Alzheimer's, and Parkinson's simultaneously.
How has knowing you have HD changed your life? Honestly, it has changed so much for me. It has changed the way I think about and plan for the future. I really want to face it with faith, confidence, and optimism instead of fear. Knowing I have HD has also made life sweeter because it has forced me to see how precious life is and to value it, and to really appreciate every single day. I have so much to live for.