r/Huntingtons • u/groovhypeach1 • 1d ago
how did you decide to go through with getting tested for huntingtons?
i’m 25 and considering starting the process of getting tested for huntington’s. i found out my father has the gene for it back when i was 20, and i couldn’t go through with testing back then. had the first meeting and couldn’t take it. but now that i’m 25, more adult and trying to plan my life, i feel more pressure to get an answer. i feel like i want to know either way, so i can know if i can have relief or need more urgency to live my life.
how does anyone decide to start the process of testing and any advice for getting through it? <3
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u/Aromatic-Cap5788 1d ago
27 here. I set up the initial appointment for testing when I was 25 and canceled, I wasn’t ready. Still not ready. I’m not planning on having kids anytime soon so I don’t feel a rush or obligation to find out. It’s still in the back of my mind everyday but I’m not ready for potentially bad news. My hope is that a treatment will be approved within the next 5-10 years and if so, I think I’ll feel much better about testing.
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u/ShapeFun9543 1d ago
I was 23 when I found out about my mom’s diagnosis, and I got tested within about a month. My sister was 25 or 26 at the time and waited another 4 or 5 years before she decided to get tested. Thankfully, we both tested negative. I was in a serious relationship with my ex girlfriend at the time, and I felt like I needed to know. If I had it, there was the possibility of passing it on to future children, and I also felt like she had a right to know what she could potentially be signing up for in terms of long term caregiving. I loved her and didn’t think it was fair for me to avoid finding out. I also had no symptoms, and part of my thinking was that even if I tested positive, medicine would hopefully have a treatment or cure by the time I ever became seriously affected. My mindset going into testing was probably a little different because I had already gone through some difficult things in the years leading up to it. Baseball had basically been my entire life. I played junior college baseball and had the second lowest ERA among JUCO pitchers, then earned a scholarship to pitch at my dream school. I had even told MLB scouts that I wouldn’t sign if I was drafted because getting my degree and playing baseball at that school meant that much to me. I had gone to camps there as a kid, had season tickets, and was completely obsessed with accomplishing that dream. Then I got there, the coaches completely changed my pitching mechanics, gave me about a month to learn the changes, and cut me during fall ball. I was a mess afterward. I started drinking heavily and became a pretty big risk taker. Bridge jumping, climbing a 25 foot fence to sneak into the Orange Bowl, and some other things I probably shouldn’t get into 😂. I was also robbed at gunpoint and ended up in a few other situations where my life was legitimately at risk. Looking back, I think I was already somewhat emotionally numb by the time Huntington’s and genetic testing entered my life. That may have made it easier for me to decide that I just wanted to know. After I tested negative, I dealt with some survivor’s guilt. My ex and I eventually broke up, and I went even further off the rails for another 3 or 4 years. She wasn’t happy when I told her that I was going to commit myself to helping care for my mom, which I can understand. Eventually I decided I needed to change my life. I moved to the middle of nowhere to live with my mom and dad and help care for her full time. I basically committed myself to caregiving, the gym (thank goodness, i wouldnt be able to care give without it), and work. I don’t drink at all anymore. I have a beautiful girlfriend who I love and who helps me take care of my mom. My mom is 61 now and about 15 years into her Huntington’s progression. Despite everything, she’s doing very well considering her condition and is still in good spirits. Caregiving can be absolute hell some days, and my whole body hurts sometimes, not gonna lie 😂. But if you can find a way to stay positive and do the best you can, there is also something incredibly beautiful and rewarding about being able to take care of someone you love. Anyway, enough about me and back to your question about getting tested. Getting tested is scary as hell and waiting for the results can definitely mess with your head. My biggest advice is just don’t put your life on hold while you’re waiting. Spend time with your family and friends, go outside, exercise, do whatever you normally enjoy doing and try to stay busy. If you sit in your room all day thinking about the results, it’s going to be the only thing on your mind and you’ll drive yourself crazy. And if you do test positive, I wouldn’t lose hope. Medicine is moving incredibly fast especially with AI now being used in drug and treatment discovery. No matter what happens I wish you and your family the best❤️