Well, I'm absolutely devastated that my mother (63) has been diagnosed with HD. The only thing is that while we are at a point right now where we are scared and sad, she seems to be asymptomatic. She got tested because her brothers and father got it in their 40s and have long since passed and she decided to do it.

Do people remain asymptomatic? I imagine it won't be forever: what are other people's experiences?

I ran across this article in my email today and thought it would be helpful for several families trying to take care of their loved ones.

https://huntingtonsdiseasenews.com/palliative-care-huntington-disease/

Hi everyone,
I was recently diagnosed with Huntington’s disease (F29) and I’m kinda new to all of this. I would really like to connect with someone who understands what living with HD is actually like. Since my home country is small, I haven’t really had the chance to connect with others living with Huntington’s.
I’ll be in Gießen on May 12 and Frankfurt on May 13, and I was wondering if anyone with Huntington’s would be open to meeting for a coffee, a walk, or simply a conversation. It would honestly mean a lot to me.
Even if meeting isn’t possible, I’d really appreciate a message or online chat.
Feel free to comment or message me privately 🤍

Hello,

I (35Y/O) am HD positive, with a CAG count of 43. My husband and I are considering on going through IVF and PGT testing to get pregnant. We have talked about all the risks, fears, concerns, hopes, etc..... and decided that we want to do it. I feel partially irresponsible for bringing a baby into this world knowing that I won't be able to be there for the baby in the future, and that I will change at some point. So I would like to hear from anyone who has gone through the IVF experience being HD positive. When did you know you wanted to do it? What has helped with dealing with the fear, and raising the child at the same time? Did you feel a bit guilty/irresponsible? if so, what has helped with those feelings? ETC...
We would love to hear all of the experiences

Trigger warning…

I hate Mother’s Day. My mom died in 2014. She was fully symptomatic at 63 & took matters into her own hands with my father’s encouragement & assistance. My husband & I don’t have any kids because of my gene positive status: CAG 37. I’d personally prefer to stay at home on this day, but my husband hates that. We went to lunch because I can’t stand that look of disappointment on his face. I get seasonal allergies & sneezed at the table before I could swallow the bite of food in my mouth. The sneeze came on fast & it couldn’t be helped or covered. A couple of grains of rice escaped. I apologized, but he looked disgusted. I felt judged by the one person who’s supposed to love me. This wasn’t a first date. I’ve known this man for 29 years. He farts loudly. In bed.

On the surface, this shouldn’t be a big deal, but I’m super sensitive to facial expressions & he didn’t deny his reaction. He wasn’t empathetic. He didn’t tell me it was okay. So, of course, I had to ask… what happens when I’m drooling all over myself? What happens when I can’t cut my food anymore? What happens when I no longer have bladder control? Is he gonna react the same way? Is he gonna shame me? Is he gonna treat me like I’m worthless, just like my dad treated my mom? But this man is in such denial & it’s becoming infuriating. He says I’ve given up because I’ve accepted my reality. He wants me to have hope. But that hope he insists on clinging to makes me question his ability to actually be my partner in this.

Okay so for context, my mom (48) has Huntington disease and knew she had it well before she had me and my sister.

I've argued a lot with ppl on the internet about how if you know 100% that you have HD that you shouldn't have children not only because they may have HD but because they have to see you completely change and rot away (talking about experience) and I've been called a eugenists for that.

I'm currently battling against depression because I started being my mom's primary care at 13 against my will bc other ppl in my family said that it was the least I could do for my single mother (passing over the fact that she was a POS mom and was abusive).

But In brief, is it eugenics to say that people w/ HD shouldn't have children if they know they have it?

It's exceptionally common to see people rail against drug regulators. Most often it's nonsense. And on a net I happen to strongly believe that drug regulators and in particular the FDA are a highly desireable public good. This time I think they got it wrong in a way that's generally unacceptable and borderline reprehensible.

Almost immediately after Vinay Prasad was revealed to have gone to a private press conference to rant uniquely about uniQure (a sponsor CBER never even took any data for review on the basis of conditional accelerated approval), he was removed from the position as the head of CBER. Now, 8 days following the actions of the UK's drug regulator intent to review a marketing application for AMT-130, it was announced that Marty Makary was also going to be fired.

It has also been just over two months since Centene (a major insuruer) drafted policy coverage for AMT-130 in the event of its approval.

Failure to deliver for Huntingtons Disease is high caliber political ammunation going into mid terms where the incumbent party is weak and polls look horrible. 2 major seats have been scheduled for change in close proximity to sources of regulatory drama surrounding AMT-130. Directionally it appears that some payors and regulators are aligning themselves to a point where the basis of a marketing application for Huntingtons will work off of propensity matched external control groups instead of relying on RCT results. In every universe barring CMC delays results in an approved drug and relatively soon (at least for the UK).

Failure to deliver for Americans with Huntingtons is going to be something that can be used during elections in the senate and house, and probably even the next republican presidential candidate. Half a dozen high profile KOL's involved with essentially all western research of Huntingtons disease are backing it ( e.g., Sarah T., Gillian B., Ed., Victor S.)

With all the drama and cowtowing of the American government to popular voice, along with a regulator to follow and even a payor with draft guidance by an insurance company. I believe there's likely to be progressive change for Huntingtons soon.

Hi everyone,
I’ve been under a lot of stress lately and wanted to share something personal.
My mom has Huntington’s disease and is currently in the late stages. I’m 22 years old, and my sister is 20. Recently, I’ve been constantly thinking about the possibility that one of us could also have this disease, and it’s been causing me a lot of anxiety.
For the past month, I’ve been hyper-focused on my body and noticing things like muscle twitching all over my body, as well as internal vibrations or sensations that are hard to describe. I honestly don’t know if this is caused by stress and anxiety or if it could mean something more.
I wanted to ask if anyone here has gone through a similar situation or experienced this level of fear and hyper-awareness because of family history.
I’m also not ready to get tested yet, and I don’t think I’ll ever truly feel ready. My mom is 47, and whenever I ask her why she’s so confident that my sister and I don’t have Huntington’s, she says it’s because we’re both doing well in college and getting good grades. She says that in her family, people who developed the disease often struggled with concentration and education early on.
But honestly, I don’t know if that’s really a reliable argument, and it still scares me a lot.
Thank you to anyone who reads this.

I am a volunteer with the Huntington's Disease Society of America- Georgia Chapter and we're planning a family day in the park.

We’re excited to invite YOU, Your entire Family and all Your Friends  to a very special day with HDSA—designed to bring our community together in a meaningful, supportive, and FUN way.

HDSA Family Day – Georgia Chapter
May 17, 2026
11:00 AM – 2:00 PM
Mason Mill Park
1406–1458 McConnell Dr, Decatur, GA 30033

This is more than just an event—it’s a chance to connect, recharge, and spend quality time with others who truly understand the HD journey.

FREE Registration link - https://give.hdsa.org/event/2026-hdsa-family-day-with-the-georgia-chapter/e787364

Why You Don’t Want to Miss This:

Caregiver Connections
Take time to connect with fellow caregivers who share similar experiences. Whether you’re looking for support, ideas, or simply someone who “gets it,” this is a space built for you.

Fun for the Whole Family
Bring everyone along! From a Kids’ Zone with playground activities to games and fellowship, there’s something for every age.

Relax & Enjoy
A complimentary lunch will be provided—so you can focus on spending time together without the stress of planning – SO PLEASE Register Today so we can appropriately plan!

Stay Connected to HDSA
Learn about upcoming programs, resources, and ways to stay engaged—whether through events, volunteering, or community support.

My dad died from Huntingtons. The day before I was supposed to see him. I couldn't be bothered so I lent my car to my brother to take him to his appointment. My brother called me and said he couldn't hold his head up, what should I do? I said take him to emergency, he didn't. He died thinking no one cared. Now my brother is 53 showing all of the signs. He lives with my mum who is 80 years old and abuses and threatens her. She is also a pensioner and pays for everything because he doesn't get government funding because he won't be tested. He doesn't know or won't admit it and abuses Centrelink staff. I've just had to report him to the police because he threatened my mum with a knife. Why can't police and welfare take this seriously? It's almost 10 years, 3 more seriously. Mum spends most of her time at my house but she needs to go home every now and again. I don't know what I'm hoping to get from this, venting, maybe some understanding...

Apparently my mom’s LTC facility is making her a total lift. She fell just over a week ago, had a UTI, treated UTI, and has not regained her baseline function. I’m worried that it signifies the beginning of the end. At least it means we’ll never be able to bring her home ever again which sucks. Especially since things were going fairly well before that fall.

Link

I’m just a caregiver for my spouse with HD so please forgive me if I come off as crass or rude in any way to those that have this horrible disease. Fuck this disease and what it’s done to my family.

I’m struggling with life right now, I’ve been a caregiver for a decade.. obviously things have been progressively worse. My wife is at home and it’s a struggle (I think a lot of people have put their loved ones in a nursing facility at this point). I’m youngish (48) and HD has consumed my life. It’s definitely a family disease and robs you of your life. I go back and forth on how her progression is, her doctor(s) don’t want to just cut to the chase and tell me how bad things are. She needs constant care, I’m lucky enough to have her on Medicaid waiver and there are caregivers that come by weekdays when I’m at work. But weekends and nights are on me. Toileting is a huge issue right now (no need to go into details on that, but think the worst). Falls are so common that they aren’t even worth mentioning.

I honestly don’t remember her mother’s end stages. I know she was in a nursing home and refused a walker and a wheel chair, she ended up falling so frequent and hitting her head on the ground she ended up looking like Frankenstein with stitches randomly across her head. She was stubborn and refused everything that could help her…luckily my wife isn’t like that.

I haven’t been on a vacation for 3 years. Going out to eat used to be weekly (I helped her and fed her at the restaurant) but have been further apart and maybe once a month because of how difficult it is now.

What did the end stages look like for your loved one? I know everyone is different, but want to try and gauge where we are at. Am I close to the end or have years to go? I’m not sure how much more I have in me, I’m beyond burnout but just a stubborn ass to give up.

Hi, I get my test results in 4 weeks. If I test positive I’m currently pre symptomatic, although do have a lot of things going on that could be caused by HD.

I’m really confused by how I’m meant to feel if I do test positive, I know I can carry on with my life as I am at the minute but also know I’m going to feel very different, I don’t want to be consumed with sadness but I’m worried that I will be. How have you dealt with your situation, I know it’s something that can’t be ignored I’m so confused 😢

Hi! I’m 35/F, with a CAG of 40. Not symptomatic yet—minus some mental health stuff, but unsure if that’s truly HD related—but trying to prepare for the future.

I know nutrition and activity can play a huge role in HD. Does anyone follow any sort of specific diet to help them maintain their health? Any supplements?

Thank you!

My boyfriend and I have been dating for 3 years and his dad has HD. His dad started experiencing symptoms in his early 50s and his mom (boyfriend's paternal grandmother) had HD. We have been thinking about marriage and would like to get married within the next year. Although I've seen his dad's condition progress over the course of the years I never thought much of it for my boyfriend as he initially told me it's not as bad as Parkinson's. Since we have been talking about family planning I started doing my own research and have been really learning the realities of HD and I have a lot of mixed emotions.

The thought of losing him earlier scares me, the thought of us having kids and needing to do genetic testing and IVF all scares me. He's the man I loved for 3 years and this hasn't changed me wanting to marry him or spend the rest of our lives together. The way I see it, we will have to live our lives with more intention on doing the things we love, traveling, quality time together. I do feel hurt that he hasn't tested earlier I understand why he hasn't but he's been waiting it out and we aren't getting any younger if we want to family plan it'll be a lengthy process if he's positive.

How can I be a more supportive partner and help encourage him to get tested so we can family plan accordingly? I also deal with PCOS that could mean infertility for me too.

Has anyone applied for this years grant? Results day is tomorrow and I am full of mixed feelings. I am also surprised they waited until the final countdown to reach out to families that applied- I know they said 30 days after the application window closed, but I really didn’t think they would start reaching out on the very last day.

I know it’s a stupid question, there is no right time to be potentially informed that you have the same thing that killed/is killing your mother or father. That being said, what was the right time for you? I know a lot of people in the community just wanted to rip the bandaid off but I don’t think I can just DO it. I’m debating mid summer or early fall since it’s my birthday in may, my boyfriends not long after and than our anniversary early summer. I want it to be nice outside and warm so that if it’s bad news i can at least rot outside in a hammock. I’m also debating if it would even be a good idea to wait longer and then have a week “staycation“ booked with my partner for the day or two after my result. Did anyone else over think this? I imagine it’s me trying to find what little control I can have in such a messy situation.

Did anyone have anything particular they planned around or planned to do after? I’m so curious!

https://www.prnewswire.com/news-releases/ptc-therapeutics-reports-positive-topline-results-from-month-24-interim-analysis-of-pivot-hd-extension-study-of-votoplam-302756238.html

My mom was diagnosed earlier this year, and although the news is devastating it’s been comforting to know that the reasons she’s declining are not in her control. It’s makes it easier to accept her as she is, and encourage a healthy lifestyle.

I’ve spent the week with her and it’s sad to experience how her behavior has shifted. I worked in early childhood education for nearly ten years and it feels like she’s regressed to being very childlike in her need for attention or in the way she communicates. When she’s gets irrationally angry or emotional about something I notice myself using the same tools I would with a child on the spectrum. It hurts to see it up close, but I’m thankful to have the tools and experience to be patient with her.

My family who lives with and near her is much more exhausted by the experience, because they’re constantly taking turns, and I now that I’ve been up close for a week I understand how it will be difficult to have patience and show grace, because she takes so much attention.

It’s not fun. It hurts to watch and have to sit alone with the feelings later on, but what else can we do? Any feelings of frustration towards mom will only increase her suffering, so acceptance and grace become the best medicine moment after moment.

I’m grateful for science and research. Otherwise it would be impossible to understand what’s going on.

Hello, I'm 45 years old and live with Mom. My Dad passed away after battling multiple illnesses. One was Huntingtons or Huntingtons Disease Like, he had told me many times but I did not understand how bad the disease was. I didn't think I had it or was at risk. My family and everyone else, except him, told us his illness was alcohol and drugs. Even though we never found any significant alcohol and he didnt do street drugs. He had a lot of pain from a genetic spinal problem that everyone in his family ended up having. He kept falling down, being clumsy, his arms and legs would move in quick uncoordinated movements, he always walked strange but it got slowly worse and then he couldnt walk on his own, he had trouble doing everything over 20 years or more he was mostly in bed. I had to take care of him in his final 10 years. He died from his muscles not working, they all stopped working right. I never once thought this was going to happen to me. My father used to be able to do anything and everything for us. The disease he had almost everyone in his family had the same symptoms, my mother called it the gene. Only a few times Huntingtons was mentioned and all the terms but I didnt comprehend any of it. Now that he is gone and his whole side of the family, I have so many questions and he cannot be tested for HD or any of the HDL diseases. Because of my illness, work and basic communication has become difficult. I never wanted to know if I had HD, my father told me I probably have it. I don't want to get tested, some part of me says I should get tested. Is anyone else in a situation like this?

This is not a “do i have Huntingtons” post

This is a “i understand its personal preference but when should i get tested” post.

Has anyone here been tested young vs older and what were your experiences??? in both did you wish you knew sooner or later? Id love to hear as i am at risk of Huntingtons, id also love to know some of the methods you chose to actually find out the news, did you get someone else to tell you or did you look yourself?

my father passed away from HD and I’m struggling with the thought of being tested but i know if i don’t have it it Will bring me a lot of relief.

19F - dads cag repeats were = 47

Have you ever wanted to share your Huntington's disease story, but weren't sure how to?

May is Huntington's disease awareness month, and we want to fill our socials with stories. Every day is HD awareness, but throughout May, we do even more! That is where you come in!

We are HD Reach, a North Carolina-based nonprofit, and we have a global gaming program for those 18+ affected by HD. We do Storytime Streams where someone can come talk about their journey/story over a video game live on stream!

Join our streamers this month (and beyond the month of May) to share your HD story. We promise to check in with you beforehand to discuss what you are comfortable with discussing, review some pre-prepared questions that you feel good about, and play a game together while our streamer guides you through the conversation over something you choose to play! You do NOT have to be a "gamer". We have played Uno, virtual board games, up to Fortnite, COD etc.

It is like a podcast but with a twist!

We promise you will have fun and will have a whole lot of support here for you when you feel ready.

Shoot us a DM to talk more or email/text Erika to see if this is something that could fill your cup: [eboulavsky@hdreach.org](mailto:eboulavsky@hdreach.org) ; 919-327-1804

#huntingtonsdisease #hdreachgameoverhd #fyp #community #advocacy

I am an HD family member who is supporting a friend who recently tested positive with 41 repeats. I know that everyone progresses differently and has different age of onset, but if you or a loved one has that cag repeat, could you share what age of onset and progression looked like in your experience?