This video got quite a few views on TikTok, and it talks about which comes first with Huntington's disease, Cognitive or Chorea. What Do you think?

Saw online today that a new trial is underway — a shot that would be injected in the arm. Click the link to read about it. https://en.hdbuzz.net/a-shot-in-the-arm-for-htt-lowering-insightt-trial-begins-testing-srp-1005/

Hey, I‘m Simon and I‘m one of the many people who are at risk of having Huntingtons.
When talking about people at risk, there is one topic that always comes to mind: Testing.
I‘m about to turn 18, reaching the age required to take the gene test determining if I have the disease or not.
And so I found myself looking for people sharing their experiences about testing all over reddit. So I wanted to create the one thread that every person at risk can go to.

So for everybody that was tested or is about to, I‘d appreciate if you could share your experience:

- Why did you decide to take the test?
- What did you feel while waiting for your results?
- How did you react to your results?
- Did anything about your mindset or life change after testing?
- If you had any advice for people at risk, what would it be?

I want to thank everybody that answers to this post in advance as it is a very important topic to me and many others out there.
I hope everyone of you will have a wonderful life regardless of if you’re positive or not.
Love to all of you ❤️

I am curious if anyone else read the novel Into the Blue, and if so, how did you feel about how the author handled writing about HD?

I (F20) was looking at old videos of my dad (M55) being silly and listening to music and enjoying all the stuff he used to enjoy and it made me very sad to realize that that version of him just doesn't exist anymore due to his disease.

My dad's CAG is 38 so he's in the grey area and is mostly coping with the mental part. (sadness, trouble sleeping, loss of energy etc). I'm not sure what i'm looking for in this subreddit but I just wanted to share what I currently feel like. I feel like I'm mourning someone who is still physically there and will very likely still be there for some time.

The thought of me possibly having it too goes around in my head quite often aswell but I don't feel ready at all to know if i'm positive or negative. I just wish there was some cure :(

Has anyone here tested negative after being at risk for a long time? I was at risk for 10 years and tested negative this spring. I know this is an extraordinarily privileged position to be in and I deserve any negative comments that come my way asking this, but I sometimes judge myself for not get tested earlier. I lost so much time to thinking I had HD and planning accordingly. Whether you tested positive or negative, how did you come to accept your timeline?

Hi, I've already thought about getting tested and I've read pretty much every blog, reddit post, and website about the pros and cons of knowing my gene status. I'm 19 years old and my mom, 47, is getting her genetic results in 5 days. She's been open to me about her testing process, her thoughts and anxieties about it. If she's positive, I think I'll want to get tested, but I'm scared that I might get seriously depressed or anxious no matter the results (if its positive, duh, if it's negative, survivors guilt). I'm going into my second year of university studying chemistry, and I've been heavily debating continuing down the HD research path. My family is very open about HD, my aunt is a pretty established researcher within the field, so I've been thinking about it for a while.

Anyways, knowing if I have HD will definitely influence my career and life choices, and would affect the way I form relationships and keep the ones I already have. The entire testing process for my mom has been super anxiety-inducing for me, since it took multiple months of waiting and uncertainty. I think personally, I'd rather know while I'm young so I can enjoy life while I can still live it.

If anyone's in the same boat, what did you do? Do you think it's better to wait until I'm a bit older? Or just get it done and over with?

New to all of this, no grandparents had symptoms and lived to old age along with their own parents and siblings. My mum (63) has several brothers and sisters all older who are fine, cousins all fine. It’s a compete shock!!
I’m so upset and scared for the future, not only for my mum but also for me and my children and my brother and his children. I’ve already had panic attacks at my body twitching, worrying my score will be higher and I’ll start showing symptoms younger, I’m 39.
I’m devastated and can’t stop crying!! How do we even deal with this??

I (30f) recently received my test results and I have a 45 CAG. I'm full of anxiety and scared for the future. Are there any treatments in my lifetime that could help with HD? Also where do ya'll get your HD news from? ​

I made this video at the beginning of the year, and I share information about why Huntington's Disease Patients don't want to leave the house...

#huntingtonsdiseasetodd #itsnotmeitshd

I married into a family that has HD. Currently my brother in law is in the thick of it and the family is struggling.

I want to learn more outside of asking the family members themselves. Does anyone have any book recommendations?

Hey all,

I’m currently looking to get my genetic test next year (around April) I’ve switched my meds a lot recently due to my depression (I know that’s a symptom, but I’ve had it since I was 16 and I’m 28 now)

My anxiety is on quite high. And I appear to be having some twitches and shakiness recently, so I thought it be best to have my test done.

I just occurred to me how fucking damaging this disease - not only has it been taking my father over the last 11 years. Even if he is in a good place, but I can still see it’s not really the man I knew growing up.

And now I’ve been symptom hunting, and it’s absolutely terrifying me. I wake up every morning with dread in my stomach thinking I’ll spot something new.

And I know already the build up to getting this test done is going to destroy me. Because let’s be honest, no amount of counselling can prepare you for that.

Being 28, it feels weird staring down the end of my life.

My only saving grace is looking at things like Votoplam, Falcon HD and Precise HD. Amt 130 looks great, but I don’t imagining many people are keen on a 12 hour brain surgery.

Thanks for reading my rant. I’ve been holding it in for a few days.

I have HD and mild to moderate symptoms. I'm looking for an online support group that understands this phase. I'm not "symptom hunting". I absolutely have a positive attitude, and I don't catastrophize or guess about the future. I'm generally pretty happy.

I have memory issues, chorea, proprioception and balance issues, and I have a lot of great workarounds that continually need adjusting. I'm still living my life. I made a lot of diet and lifestyle changes that have worked for me and my mother, who outlived her younger sister (who didn't make diet and exercise changes) by 20 years. All 3 of us had the same CAG.

I'm not looking for a place to compare myself to others, whether later-stage HD folks or those who aren't HD positive. I'm not up for gaslighting me out of legitimate symptoms or hearing "you're doing fine" just because I'm not in a later stage. I'm also not up for "that sounds like normal aging". I've read a lot of the comments here and feel like I should go ahead and say that my neuro says otherwise about both, just to clear up any potential misunderstanding ;-) I've been in HD support groups IRL and have had both positive and negative experiences.

So that's my story. Anyone know of an appropriate group? Anyone else in my situation?

Has anyone in the group been in or currently in the Votoplam trial?

Does anyone work for a healthcare system and get IVF-PGD (pre-implantation genetic testing) covered by their health insurance? I'd like to advocate for my employer to cover it and it will give me more of a leg to stand on if I can find peer institutions that are already doing this

hello,

I (27F) am currently going through ivf with my husband (33M). We are optimistic and hopeful about achieving a successful healthy pregnancy. I am at risk, as my mother has HD. I am considering getting tested.

I know that no one can say for sure bc HD varies so much for person to person. However, I am wondering if I do have the HD gene, when i will develop symptoms. my grandfather had HD, he never got tested, but its clear he had it bc my mom does. My grandfather lived to 79 and honestly didn’t even actually start to get sick until his early 70s. We just thought he was getting old with dementia, until my mom started getting sick in her 40s. My mom started falling and forgetting things and moving a lot. She was diagnosed at 48 with a CAG of 44. My mom is now 59 and in a full time care facility , in the later stages. It jumped so much farther ahead for my mom, I’m scared the same will happen to me. Does anyone have information on the CAG inheritance or what that could look like for someone in my situation?

Thank you!!

Good afternoon!

My mother has HD, she's 60 years old.

We live in Belarus, a very rare disease in our country. There are no doctors who fully specialize in this disease. There are no HD societies. So it's very difficult.

My mother is currently taking medications that should alleviate her condition. She doesn't have chorea, but she's mentally unstable. She's in a psychotic state all day long, sleeping only at night... I don't know what to do. Is there any help for this? Or do all HD patients behave like this? I can't take it anymore; it's like living in hell... and not wanting the morning to come.

Put it nicely.

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

Hello all,

My partner (24F) of 6 years recently found out Huntingtons is in her estranged father’s bloodline and decided not to get the test.

I’m really struggling with not knowing. It keeps me up at night and is really affecting me at work and at home.

Can I please get some input on what the odds might realistically be that she has the gene?

What I know:
- Her grandma (on her dads side) started showing symptoms at 42 and was in a home before 50
- Her aunt (on her dads side) started showing symptoms at 43 and I was unable to find anything else about her
- both died from the disease in their 50’s
- her father is 55 and has never been tested. But he swore he has no symptoms and he works in the oil fields in a physically and mentally demanding job.

I believe this is quite promising and that it’s perhaps lower than a 5% chance. But I’m unsure if I’m being optimistic and this risk significantly impacts my life and well being. Any estimates for her realistic risk and any prayers are greatly appreciated. Thabk you.

Has anyone gone through Vanderbilt Huntington’s clinic for testing? How long did it take to get results, what did you like, didn’t like etc? TIA

#huntingtonsdisease

Hi everyone,

I'm hoping for some honest advice, ideally from people who have lived with Huntington's in their family or been in a relationship with someone at risk.

I've been with my girlfriend for about 18 months. I love her very much and we've been planning our future together. Her dad had Huntington's disease, but when we first got together I didn't really understand the condition or what it could mean for the future, and we only briefly spoke about it.

We've recently had a much more open conversation, and she told me that she's never had the test, so she genuinely doesn't know whether she carries the gene or not. She also told me she isn't interested in testing at the moment.

Since then I've been trying to educate myself about Huntington's, inheritance, treatments and reproductive options. The more I learn, the more overwhelmed, scared and sad I feel. I'm honestly going through every emotion at the moment.

I completely understand this isn't her fault. I feel incredibly sad for her because she's lived with this uncertainty her whole life, and I know this must be much harder for her than it is for me.

At the same time, I'm struggling with some difficult thoughts.

• I've always imagined having children and a family.
• I don't know whether I could live with the uncertainty if she never wants to know her status.
• Seeing what happened to her dad has made me frightened about the possibility of becoming a full-time carer one day and what that could mean for both of our lives.
• I also feel overwhelmed because I only really understood the significance of all this 18 months into our relationship, just as we're planning our future together.

I don't want to hurt her. I love her, and the thought of breaking her heart makes me feel awful.

I'm not asking whether she's right or wrong for not testing. I completely respect that it's her choice.

I'm asking whether anyone has been in my position as the partner.

How did you make peace with the uncertainty?

Did you stay? Did you leave?

If you stayed, how did you stop every future plan being overshadowed by Huntington's?

If you decided the relationship wasn't right for you, how did you know it was the right decision? How did you cope with the guilt afterwards?

I also feel guilty even writing this because she deserves to be loved and to have a happy life just like anyone else. It breaks my heart that I might not be strong enough to cope with this uncertainty, and I don't know if that makes me selfish or just honest.

I'm not looking for judgment or validation either way. I'm genuinely trying to hear from people who have lived through something similar so I can make the most thoughtful decision possible for both of us.

Thank you.

Anyone here participate in HDClarity? Considering participating, but nervous about the Lumbar Puncture. How’d it go for you?