r/Huntingtons

My mom was diagnosed with HD 4 years ago. I decided that, right now, I don’t want to know my HD status for mental health reasons. My husband and I are at the point in our lives that we are ready to start a family. We decided together to do non-disclosure IVF. I wasn’t told how many follicles I have, nor how many eggs were retrieved/fertilized, etc. Well today, we found out we have at least TWO embryos that are PGT-A tested and HD free! (They anonymously tested me and so if I don’t have HD they didn’t have to test embryos for it). Anyway, no one else in my life understands this and I have just felt so many emotions today. If anyone has any questions on the non-disclosure piece or IVF in general, please feel free to ask!

Hi, we had a failed CVS as they were unable to complete it and now the consultant has said the only option we have is waiting 16 weeks for the Amniocentesis.

I just don’t know what to do now. I cannot bare the thought of a second trimester termination, but the thought of bringing a child into the world with HD. What would everyone else do? I keep thinking is this fates way of just acting? I’m too afraid to tell anybody as I don’t want people to know I had a late termination.

I am 28F who was adopted when I was 2 weeks old. My birth mom was also adopted. The only thing I know about my maternal grandmother is she died “young” (I have no idea how old she was and that the adoption agency said “she was an alcoholic, epileptic, crazy person”). My birth mom is still alive and is 44, she messages me on Facebook sometimes, but that is all I know of her. Ever since I heard about Huntingtons disease, something clicked in my head and I remembered those words and wondered if my maternal grandmother could have had Huntingtons and no one knew? I think about this everyday and everytime I get short tempered with my own kids I start panicking thinking I’m starting to show symptoms of HD. I know I could message my birth mom and ask her if she’s showing symptoms? But I feel like that is a random ask and honestly I’m terrified to know.

Hey guys, f20 getting my test results back for Huntingtons on June 4th. I’m really scared of course I know it could possibly be one of the worst days of my life and I’m really scared of how I’m going to react. I’m not gonna hurt myself I just can be very impulsive. I know that might not make sense. I would like any advice on how to process or handle the test results good or bad. Maybe hopefully words that I’ll be okay. I don’t like getting sympathy from the internet but I think if any group of people could understand how I’m feeling, it’s this one.

I’m considering getting tested and am weighing the different options I have. I like the idea of going to a Center of Excellence (I live about 45-60 min away from one) to have all the extra support, but our finances are tight. HD Genetics is less of a financial burden, but getting results virtually and not getting the extra specialists, etc. wouldn’t be as ideal. Is it worth it to go through a Center of Excellence? Or do people have good experiences with HD Genetics? Curious to hear others’ experiences/thoughts. Thanks!

Hi everyone,

I’m currently going through predictive testing for Huntington’s in Zurich, Switzerland, and I wanted to ask others about their timeline.
My blood was drawn on April 21st, 2026. At first, my result appointment was scheduled for July 13th, but on May 6th I got a call from neurology saying the result was already available and that I could come in earlier. My new appointment is May 20th.
So in my case, the result was back roughly two weeks after the blood draw, even though the appointment was initially set much later.
A doctor in my personal circle, who is not familiar with Huntington’s specifically, wondered whether a faster result might suggest a negative result. I’m trying not to read too much into that, because I know lab timing, scheduling, internal processes, and counselling protocols can vary a lot.
For those of you who went through predictive testing:

How long did it take from blood draw until the result was available or until you received it?
Did the timing give any indication of the result in your case, or was it unrelated?

I’m especially interested in experiences from Europe/Switzerland, but any perspective would help.
Thank you very much.🤍

Without giving out my identity, one day my partner flipped a switch and left. It was like I didn't recognize the man I had spent the last 5 years with. He suffers from HD. And I guess I never really thought about the mental implications so deeply as I did the physical. Nobody cared for him like I did, and he took out a lot of anger and trauma on me. Some of the dialogue during this separation didn't make any sense to me whatsoever. And i spend a lot of time ruminating due to my own mental health.

So I guess what I'm looking for is other stories of the struggle of being in a romantic relationship with someone with HD. How did you distinguish the pain of their treatment towards you and feeling valid in your emotions to not deserve such treatment? I have a lot of empathy knowing this might not be the person I know but also anxiety and pain from their treatment. I feel abandoned by their friends and family in the support and understanding of what's happening. I could just really use some perspective on how to handle or process what is happening.

So I’m trying to process this and help my family if I can. My SIL could have HD, has a parent with it and hasn’t been tested. And has had a few children. What is the norm in the HD community? To have kids and not be tested? Is this abnormal? To most people get tested and do IVF?

Also, are there things she could be doing if she des have it and hasn’t started showing symptoms yet?

Where is the best place to find info and resources?

Has anyone undergone early stage AMT-130 (Gene Therapy) for Huntingtons? If so, how did you go about procuring this therapy? Has it been successful? Does anyone have any more information besides the couple of articles on google?

My partner's parent died of Huntingtons but they have not been tested. They are showing clear signs/symptoms, but they are convinced that the physical symptoms are just akathisia after an initial diagnosis of that in the ER. They have a follow up appointment with a movement specialist but they originally confirmed the "akathisia" diagnosis, so am not sure how to push back on that, as it seems like that diagnose is what everyone would prefer/want even if it isn't true.

The biggest issue is the psychiatric symptoms, they have very large mood swings/emotional outbursts and are convinced they I'm the problem and abusive. I'm at a loss about how to proceed. I absolutely know that the root cause is Huntingtons but I don't know how to tell them that and/or convince them to get tested. Idk what to do and it's even more complicated due to us having a toddler together (luckily used pgd + ivf). I guess this is more of a rant than anything else, thanks for reading.

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 was recently looking to make a donation to an HD organization and many recommended HDSA. Before I make donations, I like to look through non-profit's public 990 tax documents and was amazed at huge financial commitments that wasted millions of dollars in donations.

Did you know that HDSA spent 1.8 MILLION dollars in 2023 and 2024 to create an online patient data collection platform that was deemed a complete failure. The platform was through a company called RARE-X, and it wasn't even mentioned in their 2024 year in review. How do you invest so much money in something and not mention it?

To put this in context, during the same two years (23’-24’), HDSA only spent $240,000 on lobbying efforts. Given the lack of major policy progress for HD families over the past years, it raises real questions about organizational priorities and where donor dollars are having the greatest impact.

Here are some other interesting stats that I found:
-In 2023, the HDSA CEO was paid a bonus of $49,000 on top of her $320,000 salary, despite the organization reportedly operating at a loss of around $1.3 million that year.

-In 2024, HDSA signed a 10-year lease on their NYC office making them liable for $3 million dollars over that time. Based on their website, it looks like only a few staff live near NYC.

-The HDSA National Convention this year is at a JW Marriott Resort in Phoenix where rooms rates are $300/night. Plus, registration fee $250/person. I know there are scholarships offered but that only accounts for a small number of attendees.This is unaffordable for people who need to fly in. The HD community doesn't need FANCY; they need their HD FAMILY!

Is anyone on the board of directors paying attention to this financial mismanagement? Who is accountable for this mistake?  It pains me to think how many volunteer hours went into raising $1.8 million dollars that got this community nowhere.

I also found that HDSA has a lot of impactful programs and many employees who really care, but the community should always be making sure that donations are properly managed, and people are held accountable for poor decisions (past, present and future).

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?

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

I will start the process of getting tested with HD Genetics. They recommend getting insurance and I was thinking of trying to get the below ones but was wondering if anyone waited to get insurance after they got their test results and how did the insurance process go? Also was wondering what types of insurance did you all decide get?

Long term care

Whole Life insurance

Long term disability

Hi! Fellow long time reader here. My mom was DX with HD around 45 years old. I don’t have her CAD but I know it was close to her sisters (both have passed from HD). She thankfully has been a very slow progressing case but she (at 73) is now walking with a walker (couple falls), very limited short term memory if any, incontinence issues, and slight mood swings but thankfully we go to the HD doctor in Tampa every three months and she’s over all, pretty positive with all of her medications. Very attached to me, her daughter and caregiver.

I’m writing cause I’m alone on this island, no family support really isn’t anyone left, besides my fiancé (who doesn’t live with me due to housing and my mom with HD and his kids) it’s not fair to his kids that don’t understand. But he’s my support person and is there for me. I have aniexty and of course seeing my mom progression kills me inside but worries me about the financial future to as things get worse. Does anyone have experience with long term care through Medicaid, when you weren’t able to care for your loved one, did they help assist and pay to put them in a skilled nursing facility? I know everywhere is different just trying to hear other experiences. Right now I get 30 hours a week that’s paid for (very grateful so I can work to pay the bills) she is alone for 2 hours in the morning and 2 1/2 in the afternoon) but then it’s on me. She has a wonderful case manager but she is slammed and really just tells me, we take this day by day.

Thank you all for everything! Just living off one salary and then knowing I’ll need more help in future and what happens if I can do it anymore (trying to work 50 hours) and make sure she’s safe. Just wanted to hear anyone’s experience with long term care - Medicaid. I know the places probably aren’t the best but knowing what options are in the future… thank you to everyone!

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.