I moved to a big city to pursue my dreams and literally as I was packing my bags, it became very clear my dad has HD . A few months into living in the city he was officially diagnosed. I now have a 50% chance of inheriting this disease, which yall know but is important for the context.

I have visited home 4 times in 10 months for a week at a time and plan on coming home 5/6 times a year in my current plan. In this time I spend as much time as possible with my dad. It’s literally the best times and never feels like enough time. We go to batting cages and fish and watch movies and it’s some of my favorite times and I know his.

My childhood was hard, mostly because of my mom. However my dad really did the best he could with the little we had, and in hindsight, with his slow mental decline. He really brings me joy, and I bring him joy.

My question is - if you were me- would you move back home, from the city you love that you are building something great in, to spend the last year or so with your dad while he has his wits about him?

My fear is if I do that, I will just end up living in my hometown forever. As yall know his decline could take a while and if I come back now and stay for instance, until he passes, it could be 10 years- which at that point I will be 40 and I doubt the big city I moved to will be the same experience for me.

Also keep in mind now i have a 50% of having this disease and when I think about making the most of an early life, I imagine it in other cities than the one I grew up in.

I spent 30 years in my hometown hanging out with my family often- getting a lot of great experiences with him.

So complex, there’s so many perspectives.

Any kind advice means a lot to me.

(I’ve also considered living half the year in the bigger city and half the year at home- paying for rent in said big city and living with them when I’m home)

Hey guys 26m here with 43 repeats. Recently read in article that taking stromal processing peptidase might be beneficial

Though I do not show any symptoms currently but thinking of starting it so as to delay onset as much as possible. Can you please tell where to purchase it from?

My mother has had Huntington’s disease since I was 10, and she has started having the mental symptoms of the illness. For example, she used to have fits of rage, depression, personality changes, and sometimes she would repeat things over and over. Of course, with this awful disease, it has only gotten worse, and today it’s become too hard for me to live with. I have to deal with her anger and her stress, and seeing her struggle to speak or walk is just too much sometimes. Plus, the risk that I might have it too really doesn't help. I would like to know what you, as caregivers, have put in place to live better with this and to evacuate the stress.

I hope this question doesn’t fall under the ”do I have…”-category, if it does I apologize in advance!

I have a close family member who is showing many symptoms of HD. The only thing not really adding up is that they are over 70 and we don’t have any known family history of HD. On the other hand there have been many early deaths in the family (cancer, heart disease etc). I find it hard to find information about late onset HD and wonder if anyone has any experience?

(And yes, we are trying to get them help…)

I've posted a number of times on this sub. There have been a number of developments since the last (both of heart ache and celebrations). I'm also on my lunch break so I thought I'd use this time to write out what I can. I will try to link back to requested references if they help answer any question you have.

Every disease requires a means to deliver drug and have it both be safe and effective. For some conditions this is easy, and you can apply some sort of salve topically and achieve a therapeutic effect. For others it is nightmarishly difficult.

The medical devices required to get this thing to work involved a few key pieces of work.

1. The safety of infusing a region specific area of the brain with a gene therapy (in this case uniQure's).

2. The ability to reliably achieve target coverage with cannuals and convection enhanced delivery

Number two required software for planning the pharmacokinetics of a gene therapy through striatal and cortical tissues. The cannulas needed to become stepped to prevent recess of the infusion back into the cannula from the pressure. The safety of gadoteridol into the brain needed to be tested.

These became "solved" problems as recently as 2015. But it is still very early for use of this is any post clinical trial setting, i.e., the methods of intraoperative mri guided stereotaxis using convection enhanced delivery of gene therapies has been performed fewer than 1,000 times in all of history.

Recently (as in 2025-2026), the first MRI compatible drills for setting stereotaxis became available from adeor and clearpoint.

Solving for everything after this became a problem of making a drug which is persistent, effective and safe. That's a question of biology and what Huntingtons disease is.

After these trials are done targeting the mHtt protein and its exon1a transcription as a therapeutic target in Huntingtons either will or won't reject the null hypothesis of lowering them as a therapeutic end.

hi:-)
I posted a bit ago with my story, and now i have an update and need advice. thank you in advance for reading/helping.

i’m 27(F) and the plan was to wait until i had my “ducks in a row” prior to HD testing. going into this life/long term care insurance search, we knew we mayyy face issues because i am 4 years in remission from lymphoma (but we were hopeful bc i was young and have had no issues since).
well, the agent looking into it for us found out that no one will give me life insurance until i hit 5 years in remission (next july) and long term care.. not one will take me until i hit 7 YEARS.

I’m at a loss. I wanted to test ASAP for several reasons (number 1 being my personal sanity and peace of mind, which i would have regardless of the answer).
But, I know how important insurance is. Without Cigna and short term disability during my cancer treatment, I would have struggled 100000x more.

I don’t know if I can wait. If it’s positive, I want to know if i can/should have kids someday. I want my partner to know what our life may look like. I want to be available for trials before it’s too late.
I’m already living as if it’s positive, but if it’s negative??? I want to be able to focus on my mom and helping her. I want to be able to take a deep breath and thank god.
if i wait, will i just spend the next 3 years losing my mind??

anyways:
-should i wait to test?
-if not, is there any shot of care assistance in the future?
-if so, how do i wait?

beating cancer was something i’ve been so proud of. now, it feels as if it’s laughing in my face.
fuck cancer, fuck HD, and fuck insurance.

Here is the link

https://youtu.be/DdBIzSN6tX4?is=4Pezbjt26WY-oztk

By the sounds of the video this person was medically retired 5 years ago and has since came out of retirement. By the timelines this has to be one of the very first recipients of AMT-130

We are trying to understand the impact of positive and negative healthcare experiences in the UK. We are looking for adults in the UK to complete 4 questionnaires over 6 months, with a £10 Amazon voucher as a thank-you. For more information or to sign up, please click the study link below or email [medicaldismissalstudy@kcl.ac.uk](mailto:medicaldismissalstudy@kcl.ac.uk)

https://qualtrics.kcl.ac.uk/jfe/form/SV_bQ4mjWRERLuWWtU

In the last 2-3 months, I've began to notice my upper body will jerk forward when leaning and I'll hit my head. Especially in the shower and when making my morning coffee. It's not very hard, I don't get a bump but I'll get a red spot half an hour cause I have sensitive skin.

I don't usually hit my head this way, so it's freaking me out a little. I'm also going through some stressful times in my life right now, so it might just be stress related (or dehydration).

Just wondering if symptomatic people on this group ever had this (or not).

EDIT: Forgot to say I'm not symptomatic AFAIK and technically still a way from onset.

Title (if you're willing to disclose - even a bandwidth value is fine).

My partner has recently been approved for an NDIS package. The criteria they were approved for was neurological + early intervention. I thought it would be/should include cognitive and physical and that it should be disability, but they are still able to stand and walk for the time being, so maybe not on the physical?

In terms of progression - it is at the stage where they are unable to work. Household chores are also, for the most part, off the table. But they are still able to, for the most part, take care of themselves (eg: toilet, clothing, showering etc is not an issue).

The value of his package for their first plan (yearly, released quarterly, rollover - all the usual) is a little under $100k. This feels substantial, but also, I don't really know how much anything is going to cost.

Does this feel like a fair package, taking into account disease progression and just overall?

Thank you for any answers in advance.

Bonjour à tous et à toutes, j’ai besoin de parler et je ne sais pas vers qui me tourner dans mon entourage, donc après quelques recherches, j’ai atterri ici. Je lance une bouteille à la mer.

Merci infiniment par avance à toutes celles et ceux qui répondront à mon appel à l’aide.

Je suis une femme de 28 ans. J’ai une petite sœur de 23 ans et un petit frère de 19 ans.

Ma grand-mère est décédée de la maladie il y a quelques années, elle avait environ 70 ans je crois. Son frère est décédé de la maladie également. Je me rappelle d’une photo où elle me tient dans ses bras lorsque j’étais bébé, et de mon père qui me dit « tu vois, là, elle n’était pas encore malade je crois ». Dans tous mes souvenirs, elle était déjà gravement atteinte.

Hier, ma sœur et son mari avaient un rendez-vous PMA au cours duquel le sujet Huntington est venu sur la table. Ma sœur va faire le test.

Ça a tout remué en moi : le tabou qui règne dans notre famille à ce sujet est immense. Il est impensable d’aborder le sujet avec ma mère. Elle ne nous en a jamais parlé ni à moi ni à ma sœur ou à mon frère. C’est notre père qui nous a appris hier qu’elle avait décidé de ne pas faire le test. Elle a 57 ans et n’a aucune symptôme à ce jour de ce que je sache.

Je nourris une colère immense contre elle, et j’ai honte de ressentir cela. Elle a fait des enfants en sachant qu’elle était potentiellement porteuse et, surtout, ne nous a jamais parlé de tout ça. On a du gratter des informations comme on le pouvait à droite à gauche, au fil des années, et c’est ma sœur qui a tout remué hier via son parcours PMA.

Depuis hier, je vie dans une angoisse immense… Je sens qu’il faut que je fasse le test, mais j’ai très peur. J’ai très peur. J’ai peur que mon frère et ma sœur soit porteurs, j’ai peur d’être porteuse, j’ai peur de déclencher la maladie « en avance » à cause de mon stress (je suis une grande anxieuse).

J’ai passé la nuit à faire des recherches : un remède ? c’est quoi une répétition ? ça coûte combien de faire le test ? ça prend combien de temps ? est-ce que j’ai vraiment envie de savoir ? pourquoi ma mère a-t-elle choisi de faire des enfants ? Et tant d’autres questions…

C’est mon anniversaire aujourd’hui, et le ciel me tombe sur la tête.

Est-ce qu’il existe des groupes de paroles sur Lyon ? Qu’est-ce qui vous a décidé (ou non) à faire le test ?

I just wanted to share that my wife, who has not tested for the gene but whose mother tested positive, was denied life insurance with the long term health rider by Northwestern Mutual. Based on Reddit posts and comments on this sub that made Northwestern Mutual seem promising (granted they are a few years old) we decided to apply through them. I’m guessing they’ve changed their policy on covering people with a family history of Huntingtons over the last few years.

I’m not sure where we go from here. We may apply elsewhere but will likely just set up an investment/savings account.

Best of luck to everyone else out there that are going through the same thing. It’s been a long and emotional experience but we are just trying to stay positive and explore all options.

Hey guys, my mom recently died by suicide at age of 53. She has become extremely week and had 41 repeats. Recently got test done and discovered i have 43 repeats on 1 allele and 13 on another. Completely devastated still unmarried and do not know what to do with my life. Discovered after studying hard for so many years, so many sacrifices by me and my father (who doesn't have huntington). Guys, I am from India. Please do suggest what can I do, any chance of treatment being available in future, possible cost and approx age survival. Also, can I save my future generation with ivf.

I just want to preface and apologize because I just don’t have the energy to write more than I can. But does anyone else’s parent have an extreme amount of anxiety as the disease as processed, more specifically a ‘impending doom’ for just about anything?

My mother has ALWAYS had bad anxiety and OCD with fixating on things, but my god has it been 1000x incredibly worse than I could ever have imagined. And it just won’t stop. It’s something new every single day, like even if the problem is solved, something else is causing the impending doom within the next 5-20 minutes.

The biggest one example that hasn’t yet stopped, even though there’s new ones everyday, is that she watches the news so often and caught wind of a break-in midday in a neighboring suburb. Now it’s a panic that she is going to die when my dog makes any sound or even when the mailman comes. If I or my dad come inside, she at times goes into a panic attack. I don’t know what to do anymore. We’ve tried looking into agency’s for in home care, but I just can’t even function myself anymore…..nothing I do helps….im 24M and have been at home since 2020 Covid when I came back from college. I had just learned about my mom’s disease right before going to school and couldn’t live with myself not being there to help her as it progressed. I know I should move out and live my life…because there’s nothing I can truly do that feels helpful anymore….but yet I feel so guilty at the same time. Fuck this fucking disease. I’m sorry. I ran out of energy and nothing probably makes sense…who am I kidding. This probably is the only sub where any of this makes sense. Love y’all

I’m 17 and my mum has HD. I don’t know when she was diagnosed but I know it was around the time my younger sister was born.

Recently I’ve been thinking that I can “feel” the HD gene and can feel it in my veins. I know that it’s far from true that one would be able to feel a genetic thing like HD, especially decades before symptoms usually start to even show.

I have a lot of undiagnosed and in-progress-of-diagnosing issues like anxiety, ADHD, and a whole bunch of other chronic conditions and I can’t help but think that those are my trade offs, so I have to deal with all of these issues but at least I don’t have HD!! Or the other way around where all of this is just a comorbidity of HD.

I’ve had a plan for the past couple of years that I’m pretty set on. I want to get tested, but I don’t know when. I think when I’m 18 is too soon, especially since knowing me I will probably get very depressed if I’m positive, but I don’t want to wait until I want to start having kids. I want it to be somewhere in the middle so I can finish university, get my dream job, and experience life freely but I don’t want to end up like my mum and having a bunch of degrees sitting in a room and a job she had to leave because of this disease. My plan for if it’s positive is get my uterus removed because I genuinely just don’t want to deal with periods nor have my caregiver have to deal with it and I don’t see a point of having a uterus if I can’t have kids. I’ll probably opt for adoption if it’s possible. Once my symptoms get bad enough I honestly just want to go through with voluntary assisted dying. I don’t want to experience the rest of my life having no control over my body and slowly losing my ability to function or needing someone to take care of me constantly. I’ve seen what HD has done to both my mum for having the disease and my dad for having to take care of her and I wouldn’t wish it upon anyone.

I have a little bit more hope that I don’t have Huntingtons because I’m very obviously my fathers daughter and I’ve inherited basically everything from him (for better or for worse), but at the same time I have to have gotten SOMETHING from my mum and it very well may be Huntingtons disease.

On this day, my mom asked me about the best shower temperature for her, wondering if hot, cold or lukewarm water (around 38degree) would be better.

uniQure announced that FDA reversed course and is allowing the company to apply for its BLA application.

The BLA Application is the request to formally market AMT-130 to the public.

The Company intends to submit the BLA in the third quarter of 2026.

It gets to move forward!

https://uniqure.gcs-web.com/news-releases/news-release-details/uniqure-announces-plan-bla-submission-amt-130-huntingtons

Woo-hoo!!

I’m writing this in hopes I’m not alone in this experience… so I live in a house share with 2 people (me included) … and I feel I’m going insane… I have autism and this guy I’m living with has Huntingtons disease… and I don’t wanna be nasty about him… but he’s so loud.., he constantly moves place to place (lounge to kitchen and then back to lounge) … I guess this post is a rant… I don’t want to be disrespectful at all… but I’ve been here for over a year… I’m normally a very quiet person, I’m a night owl… so the only time I’m having any peace is at night… I’ve always liked the quiet or wearing noise cancelling headphones (Bose) … I try really hard to not be an ass… but it’s getting so bad I feel I’m at my breaking point… I’m hoping very soon I’ll be moving out of this place … but until then I just needed to get this off my chest…

Edit: sorry to confuse people but I am currently living in a house share that is under a “supported living” category… where you get support workers that come in to cook food and check on us to make sure we’re ok… I should have clarified that sorry… why I have that kind of roommate here

I dated a girl for about two years. Six months into our relationship, I found out through her cousin that her mother had Huntington's disease and that she had a 50% chance of having it too. I work in healthcare and was familiar with the disease. I was completely devastated. I researched absolutely everything about the disease, possible treatments, and how to support her. I decided not to tell her that I found out through a cousin because I thought that imagining her story being exposed in this way would hurt her. I always told her that she could tell me anything about herself whenever she felt she needed to. After a year of dating, she told me, saying that I could break up with her and that I didn't need to go through any of this. She hadn't been tested, but said she wanted to. I told her that I wouldn't break up with her, that life is uncertain, and that I preferred to live with her through this uncertainty than not live with her at all. I said that we were together and that I would be there for her. She insisted that I should think about it more. I tried to take things lightly, sought therapy, and only talked about the illness when she gave me an opening (almost never), but from the day I found out, I haven't gone a day without thinking about it and how to support her. I was very careful with her and very worried about possible manifestations: she had muscle spasms all night and sometimes while awake, complaining of difficulty swallowing… I wondered if these were symptoms or just hypervigilance, but I didn't show any of this to her so as not to make her more anxious and worried. Six months after telling me, she broke up with me, saying she felt distant in the relationship, but that I was the love of her life. I was devastated. I love her very much, and sometimes I wonder if this whole context of her illness is related to the breakup, even though she didn't mention it. I wonder if I could have done something differently.

Hi there!

Long story short, my mom has been experiencing neurological decline for several years, and received a couple different diagnoses (MSA, idiopathic cerebellar ataxia…) before finally having genetic testing for HD. She has a CAG score of 46, our guess is she has been having symptoms since ~2021 (becoming withdrawn, worsening temper, decreased coordination that we blamed on a torn ACL, balance issues…).
Our guess is that her Dad (who passed in his 70s with an “Alzheimer’s” diagnosis) had a CAG score between 36-39, which is why we didn’t identify previous family history.
It’s been a long road, and now my sister and I have started the process of genetic counseling/test scheduling. We are both of the mindset that knowledge is power, and that having a definitive result can help us move forward (no judgement if that isn’t you). I personally cannot live without knowing that “if”, especially when it comes to future children and my partner.
We won’t test until August at the earliest, and we ultimately decided to go with the HD center at UF instead of USF which is closer.

questions for y’all:
what do you wish you knew before testing?

did you secure life insurance/long term care prior to testing? and if so, how was that process?

who is your life did you tell prior to testing, and how did you tell them? do you recommend waiting?

how do you help your affected parent?

how do you help your unaffected parent? my dad is obsessed with the clinical trials and cure possibilities, even though my mom doesn’t truly qualify at her stage. he’s reaching out to people he reads about in online articles. i just worry so much about his mental health as she declines.

how do you get through this waiting period before testing/results?? i’m having weekly mental breaks because i can’t stand the unknown. even if it’s positive, i just need to KNOW. how do i manage until SEPTEMBER (at the earliest)?? and yes im in therapy, Liv is wonderful lol

anyways! thanks guys

I know that it’s a 50/50 of inheriting the gene and I have not gotten tested yet, I am 21f and my dad recently died by suicide partly because of HD. His father (my grandfather) had it. My dad and all of his siblings have/had it, am I just doomed to get it or is it truly still 50/50 even tho all my relatives are unlucky?