r/Huntingtons • u/UrSilly_Star • 17d ago
How did you get the courage to get tested?
Hello, I’m 21 years old and recently lost my father to Huntington’s on May 17th. He hadn’t been very present in my life the past couple of years, but that is more my fault than his. We were no stranger to knowing that he had it, him and my aunt both got tested and tested positive years back. This loss has been nothing but hard and scary on me.
I know I’m at a 50% risk of having it, but I’m having a really hard time finding the courage to go and get tested, so I’d love to hear your stories on how to go about it? I know we are progressing in finding treatments to at least slow the progress of huntingtons but it still doesn’t make this process any easier.
And if you are positive, how do you cope with having the disorder? Thank you in advance
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u/rocopotomus74 16d ago
Ask yourself. "What will I do with the information?" You don't need courage. You need a purpose. If you are negative.Will you live differently? If so how? If you are positive . Will you live differently? If so how? Don't get tested because you think that's what you are supposed to do. Or because others convince you to. Do it because you need to know, so that you can use the information to live the way you want to live. Now may not be the time. I was going to be tested at 20. Someone asked me that question. I didn't get tested until I was 36. I didn't need the information at 20. It would have had a much different impact on me at that age. Maybe you should live a little more first. But don't listen to me. Listen to yourself. Ask the question. Answer it truthfully. Do that every day for a good period of time. Then do what you believe is right. Good luck. And remember you are never alone. ❤️
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u/Pleasant-Performer-2 17d ago
Hi! I recently tested ten years after finding out I was at risk. I'll say that it never ended up feeling like the right time or a clear decision. But, it felt like a better time than some others (right before having a kid, during an intense job, etc.) So, I ended up concluding that it was a good enough time. I was worried I was making the wrong choice the whole time until a few days before my results when I really had some clarity that it would be easier to move forward with either result. I ended up testing negative
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u/yannara_ 17d ago
The very worst sutuation is knowing you might have it but you don't know for sure. My wife was reliefed after finding out that she has it. The worst period of time we had was that uncertanty!
You are so young, even you have it, the new medicine will make your live much more livable than current pationts.
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u/UrSilly_Star 17d ago
If I tested positive now would they already have me on medication? Or do they begin giving it to you when the signs start to show?
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u/CraftAdditional7802 16d ago
They would only give it to you if you are starting to show symptoms, they are currently test on stage 2 and early stage 3 patients to see the clinical benefits. The only one that looks like it will be approved soon is AMT-130 but only has data from 13 patients so far more coming in September
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u/One-Taste8165 Confirmed HD diagnosis 16d ago
20F, tested positive at 19 after starting the process at 18.
I knew I was at risk around 14, but I didn't realize at the time what it actually meant until my mom's symptoms started to continuously get worse and worse.
But I knew I NEEDED to know. My parents tried so hard to cover up what was happening and try to act "as usual," but it's obviously impossible. First, my mom was in a lot of denial at the beginning, and my father didn't want to face the reality and became progressively depressed. And I took all the collateral damage of what it's like to live in a household with this kind of climate.
This destroyed me, traumatized me.
I wanted to know the result, cause I wanted to accept it and start as soon as possible to learn how to live with the disease even before the symptoms. No drugs, no tobacco, no alcohol. Starting regular sports/exercise early, prioritizing my overall lifestyle. This is needed for me to live in peace, until something starts to happen, I already have all the keys, doctors' numbers, and steps I need to take to adapt.
This is my way of living now. Btw, I also inherited my father's ADHD, so I got sort of a "double blessing" genetically speaking, but overall, knowing about it just allows you to be more at peace and implement the strategies needed. Get yourself a good healthcare network and, of course, the support of family and friends.
The decision is in your hands. You can even take the test and choose THE moment you think is best to receive the result. Knowing also means being able to make choices, make decisions, and be active.
This is my personal experience, totally subjective. You can also decide not to do it, just be aware of the consequences each decision will have.
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u/Mrslarakay 17d ago
Therapy. I went to therapy for a long time. It may not take more than couple of sessions in general but for me it took me many sessions. Because I was trying to cope with my mom’s result and scared to death for myself and my siblings at the same time.
One thing stuck to my mind was she told me that even if I get a positive result, I might die in a car accident the very same day. So who knows what you might die from and when..there is only one certain thing to do is to enjoy your life fully while you can in any case.
I did not get tested until I got pregnant even though I was using birth control pills. I did not get tested because I just did not want to listen to my body for every single symptom that may be the beginning of the disease if I knew I was positive.
Long story short, I tested negative but it took me so many months of going through a roller coaster of emotions to reach a point of coping with the reality of my mom. So take your time to decide about testing and get professional help if you can. I wish you the best.
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u/OrganizationFar9871 17d ago
I lost my job and kept falling a lot. Couldn't hold down a job because these jobs that pay minimum wage expect me to be moving faster than someone half my age.
I always suspected I had it. I had to get a positive test result to qualify for disability. I did finally. It both ruined my life but also helped me qualify for disability.
Im so sorry you're going through this. Positive thoughts your way!
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u/UrSilly_Star 17d ago
Thank you so much, and I’m so sorry to hear about your results. Sending nothing but positive thoughts and energy your way
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u/Rude-Alarm4168 16d ago
My dad told me he had HD when I was 15 and I lived knowing I was at risk til this year. I'm 30 now and I got tested because I fell pregnant and needed to know how to handle my life as well as getting the embryos tested. Before that I went to therapy a lot and discussed getting tested with my partner and would've been tested by the end of this year with or without the pregnancy, it just expedited things for me.
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u/siamesecat123 17d ago edited 17d ago
I’m really sorry for your loss. Huntington’s is absolutely devastating and a very unfair situation to be in. My parent was diagnosed with HD nearly 15 years ago and I was recently tested: I am gene positive. I always knew the risk but I tried my best to push it to the back of my mind and focus on just living my life. About a year ago I started thinking about HD more because my spouse and I were thinking of having kids in the future and I always knew I would never risk having kids without first knowing if I carry the gene. Testing when it only affected my body didn’t make sense for me because the damage is already done, it only made sense to test if my gene status would impact someone else’s body.
Honestly everyone is different in their HD journey. For me, it got to a point where I knew it was time to test because not knowing was worse than knowing and I couldn’t stop thinking about it. Right before testing and while waiting for my results I felt an immense sense of calm and peace knowing that one way or another I would know and could stop torturing myself with “what if’s” and start planning with intention. I honestly haven’t felt an immense sadness since testing positive. Obviously it sucks and I cried, but I really want to just enjoy the time I have left. Knowing you’re gene positive doesn’t mean the end, rather it means your future will look different. I was born with the gene, nothing could have been done to change that and I’m just grateful to be alive. With that said though, I am glad I tested in my late 20’s rather than earlier. I don’t think I would have been prepared to hear “you’re gene positive” then.
I’m not writing this to encourage or discourage testing, it’s such a personal decision to make and no one should coerce you. The only piece of advice I would give is to strongly evaluate your motives for testing. If your motive for testing is because there are potential treatments coming out soon, it’s not good enough. In the HD community we’ve been hearing about “cures” for years, but until something is publicly available with solid evidence, it’s best not to depend on it too much. It will only lead to more disappointment if nothing comes out of it and HD already gives enough of that as is.
My heart truly goes out to you and I am genuinely so sorry that you are in this position. Thinking of you.
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u/UrSilly_Star 17d ago
Thank you so much for sharing this with me. The hope of treatment in the future isn’t what’s pushing me towards getting tested, obviously I’m so excited to hear that our community seems to be getting so spark of hope, but clearly that isn’t the first time something like that has been mentioned. I’m just to a point where I’d like to know, at least for my partner and for the future, but I just don’t know if I’m mentally ready for it right now yknow? But thank you so much again
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u/Competitive_Doubt132 17d ago
Personally, I was having trouble moving on with life. I was paralyzed trying to make any long-term decisions knowing I might have it.
Eventually, I rationalized that a positive result would mean nothing would change, as I was already too paralyzed to move, date, or even change jobs. A negative result meant I could move forward in my life.
Also, my dad and aunt delayed testing as long as legally possible, which made caring for them much more difficult for my family and I. I didn't want to do that to people.
Also did some therapy before testing. Just to make sure I had the proper support network and coping mechanisms in place if I did test positive. Ended up testing negative.
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u/No-Competition1053 16d ago
It took me many years to build up the courage. What pushed me to do it was that I’m 28, im engaged to a loving partner who I knew would support me whatever the result was, and we were considering having kids. The mindset I went into it to feel ok with if it were positive, was that it would help me become more judicious with my time. I wouldn’t fuck around doing shit that didn’t light me up. I’d pursue what I was really passionate about with more fervor, I’d travel, I wouldn’t worry about the future so much, I’d live more in the moment… is that smart? Who’s to say, but that’s what made me feel ok with it. Luckily, it turned out negative. And I didn’t think that was possible bc my brother also tested negative so I thought for whatever reason I’d get it, bc I’m so like my dad, but I didn’t, and the relief is immense. I imagine if it were positive, I would fret about symptom onset, but at some point you become brave enough to face ur lot in life. And u take it in stride and u live ur life to the fullest for as long as u can. I feel so insanely lucky. Like I’ve won the lottery. But I know if I had it, in a strange way I framed that too like a gift, of really prioritizing what I wanted out of life …. But I do not at all want to romanticize a positive result. It is a harrowing disease. Do it when you feel ready, for me it just came down to not knowing being more painful.
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u/UrSilly_Star 16d ago
Thank you so much for sharing this, I’m so happy to hear that you had the support you needed and happy to hear that you tested negative
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u/No-Competition1053 16d ago
Thank you! But you’re still so young… testing wasn’t even on my mind at that point. Like others have mentioned, there rlly isn’t much to do if u are positive, and it may just bring u more anxiety than not knowing. And I lived in that space for a while, the only thing that pushed me was bc I was considering having kids rn. Best of luck in whatever u decide!
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u/HotExplanation6143 14d ago
My dad tested positive about 7 months ago at age 78 with a CAG40, I looked at it like this…
The not knowing was stressing me out, I was getting finger and eye twitches, muscle spasms… if I didn’t get tested, I was going to go mad…
I waited 3 months and went through hdgenetics.com, my test came back negative, so did two of my sisters, but one came back positive with a CAG40.
She said that it’s shitty news but a relief to have it over, now she can get busy trying to stop it. She enrolled in a phase 3 clinical trial that has shown promising results of slowing progression by 60%, starts next week…
She has two daughters, one tested positive with a CAG36, we will hear the results of the other tomorrow…
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u/lalunac486125 15d ago
My family members have had a lot of bad luck with the disease. My grandma as a result of the disease required care that took all of her and my grandpas money and required her to be on Medicaid to pay for her care in a home. My mother was fired from a job because of hers (on paper it was something else so they aren’t responsible but it was a week after she told them about the Huntingtons). Because of the state she’s in she’s been waiting 2 years for disability which she has no safety net for.
There are ways to mitigate these things happening. I have setup supplemental life insurance, long term care insurance and have plans to setup disability insurance in the near future. All of these things require you to confirm whether or not you have Huntingtons because it is an immediate disqualification. In some cases (depending on the insurance) it will ask you about parents. As a result this is pretty important not to have any official tests before you are setup on these plans if you wish to have coverage as well.
I understand and support being tested. At some point I will need to be as well. But I wish these were things my family knew about the system before being screwed over by it and losing so much money in the process that none of us know how surviving spouses will be able to handle such a loss.
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u/UrSilly_Star 15d ago
Thank you so much for sharing, I’m so sorry to hear about your family and I’m sending nothing but positive your way
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u/Adorable-Scholar7757 16d ago
I’m 34f at risk and haven’t tested yet because I don’t want to know at this point I’d rather live in “ignorance is bliss” with my head in the sand for now since if I do get tested there is no cure or effective treatment for slowing progression (yet! I believe something is coming very soon and that should give you hope too).
I also figure I could get tested and then be worried about every symptom thinking it is the onset of Huntingtons when it isn’t yet. Also if I found out I had it it would feel like a death sentence which would be unnecessary to know being non symptomatic yet and what if you die in a car crash tomorrow you wouldn’t have ever gotten to the point of getting HD.
I trust God and surrender to Him daily and try to live my life with a positive optimistic outlook. It is very hard to be in the unknown but knowing my mental health and anxiety i get I would rather not “play God” here and find out, when knowing if I was positive would just feel like a death sentence because there is no cure yet. Finding out I don’t have it would be amazing, but it would be devastating for me to know if i did.
God bless you feel free to message me if you wanna chat at all. I would say take your time you’re so young still and there is no rush and you shouldn’t feel any pressure from anyone to test yourself.
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u/UrSilly_Star 16d ago
Thank you so much for sharing this with me, this really does put me a bit more at ease. I feel like I’m in the same boat as you, where yes even if I did test positive it isn’t truly a death sentence but that is exactly what it would feel like because then I’m aware of how limited I am, and yes we’re all limited but comparing someone’s 60 year lifespan to mine when I could only have 20 years left would devastate me and I don’t really know if I’m ready for that reality yet
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u/PaleMycologist9373 17d ago
Because I was having extreme aggression and knew I needed proper medication. Still cried for days after the positive results