r/Huntingtons

I haven’t been tested, im 29, and literally terrified.

I posted here months ago and constantly look on this page.

I won’t ever get tested. With my mental health how it already is / has been, that would literally be the ‘thing’ to make me just snap. The counselling etc you have to do prior etc, i wouldn’t even pass it. Seeing my grama the way she lived for 11 years in a bed being abused by staff etc, I would k*** myself. Honestly.

Is there even such thing as ‘chances’ ? Like what would mine be… my mom (i pray SHE DOES NOT) but think is showing symptoms and has been for a while. Shes 45 this year. Her mom had it. And my gramas oldest sister had it. They never found out what side did, her dad died before she was born, they think him.

My minds racing, terribly fast. Ugh

So, I got tested at 27, and recurved a repeat of 47. My mom developed symptoms with a similar repeat on her mid to late 40S. My aunt was a lower repeat but developed in early 40s.

I'm sitting here at 36 now, and have developed physical symptoms earlier than anyone else in the family (there's a few more relatives but I don't speak to them)

Why does it feel like my physical symptoms are progressing really fast? Like stuffs been pretty noticable for like 2 years and started with the brain fog and the worsening of my emotional side of it. Then it started with my hand not listening and not being able to swallow stuff sometimes. Now I've got those issues but with way more Bs. Now I find that a forget to breathe sometimes. My swallowing is worse. I can't walk without my knee giving up on me mid step every few steps. My wife noticed a bit of extra movements when I walk or do anything. I'm perpetually exhausted. The brain fogslis bad enough that it makes having like any type of conversation require way more thought and I forget I was saying alot. My speech is also slurred a bit now and my spaciwo reasoning is awful. I have alot of bruises from walking into door frames in the house I've lived in for 6 years also furniture that's never moved. I also was into stuff at work which hurts way more.

I'm a forklift operator but I'm considering getting removed and placed on disability. I can't focus enough to do work in the office there.

I'm already seeing a neurologist and a movement specialist.

I guess I'm asking why does it feel like my symptoms are progressing way more aggressively than anyone else k know?

And why does it feel like the universe is kicking me in the ballsyltoplr times a day?

I often find myself scrolling in this community when I am lost in thought or overwhelmed with being at risk for HD. I am meeting with a genetic counselor later this month and I have decided I do want to get tested, which is something I had always been against.
I just feel like my life is on hold right now, I want so badly to be negative (duh) and I can feel how freeing that would be. I don’t know how I will react to a positive result. I really want to have hope for a happy life regardless of the outcome, but I struggle with this. My father was not happy, my childhood was not happy.
I try to remind myself that I am not my father.
This whole thing is just so hard, everyone has different life circumstances and challenges that they face, but HD just feels like it is stealing my life.

How do you all cope, how do you cope with the stress of upcoming testing?

And I am Sorry if this is insensitive, I do believe people positive for HD can live meaningful and positive lives, this is all just based on my own fears and life experiences.

Hi! I’m 30YO HD gene positive. I recently learned HD runs in my family so I decided to get tested before having children.

I’m devastated to learn I have the gene but I’m really grateful for the science that exists to have HD free children. Unfortunately, my insurance doesn’t cover IVF.

I’m curious if anyone could share their experience or message me if they’ve applied for the Help Cure HD IVF grant? From my research, applications will open for 2027 in January and close at the end of January. If you are selected, you need to do IVF within 6 months. How soon do they notify selections?

Also, I see they have partner clinics. I live in PA and there are no PA clinics or any clinics near me. Can you use your own clinic?

Would also love to hear any success stories with IVF!

Hi Heather,

 

Thank you so much for reaching out. We are grateful that you took the time to contact us, and we want to make sure you have the most accurate and up-to-date information.

 

We are actively working to open study sites across the United States. The locations communicated to the community for 2026 are Denver CO, Boston MA, La Jolla CA, Columbus OH, and Phoenix AZ, and our goal is to have at least five sites actively recruiting in the US by the end of 2026. As each site opens, its location and contact information are posted online.

 

If you would like to learn more about the study, including the full inclusion and exclusion criteria, you can find that information on the study listing at Study Details | NCT07378644 | ClinicalTrials.gov. Confirmed site locations and their contact details are published under the Contacts and Locations tab on that page, and on our study website at FALCON-HD.com. Study Information Worldwide | Falcon Hd

Please note that site opening timelines may change, and planned sites are not guaranteed to open as scheduled. We would recommend checking the listing periodically for the most current information.

 

Additionally, it's worth noting that each study site is responsible for determining whether a person is eligible to participate and for enrolling participants. Skyhawk does not make those decisions. We would encourage you to speak with your healthcare provider about your interest in this study. Once sites are posted, you or your healthcare provider will need to contact those sites directly.

 

Lastly, if you are not already, we encourage you to stay connected with your local, national, or international Huntington's disease advocacy organizations, as they often share timely updates and additional resources.

 

We know how meaningful it is to have access to research like this, and we will do our best to keep the community informed as we make progress.

 

Thank you again for reaching out, and we hope you found this information to be helpful.

 

With hope,

 

The Skyhawk Therapeutics Team 

 

SKY-0515 Falcon-HD | Skyhawk Therapeutics, Inc. | 180 3rd Ave., Fifth Floor, Waltham, MA 02451 | sky0515trials@skyhawktx.com  

This e-mail, as well as any documents accompanying this e-mail, contains confidential and/or privileged information that is intended only for the addressee(s) identified above and is delivered subject to obligations of confidentiality and non-use for any purpose other than as permitted by the sender.  If you are not the intended recipient or if you do not accept the obligations of confidentiality and non-use contained herein, you are hereby (a) notified that any review, disclosure, copying, or distribution is strictly prohibited, and (b) requested to return this e-mail to the sender and delete this e-mail from your records.

 

 

I‘m about to turn 18. I want to get tested. What should I do before I make an appointment?

Seeing that Uniqure’s stock crashed because of the trial has made me very anxious - reading the reports it seems like there are still positive takeaways. does anyone with more experience than me know what this might mean for approval, particularly in the uk and aus?

Hi all,

I have been reading many posts in the past months. So many stories, fear, vulnerability and heartwrecking situations…I find this communitity as a wonderful place to gather information, sharing, offer & receive support and comfort.

I think time has come to share my story and ask for help.
This will still be a somewhat long post, but I’ll try to keep it focused. There are some very difficult questions that I imagine many HD or potential HD partners have asked themselves at some point.
I’m 41, female. I met my husband when I was 23. He is two years younger than me, and we have been together ever since. We have been married since 2020.

I knew there was a neurological disease running in his father’s family, but for many years I didn’t even know the name of it or much about how it manifests. I eventually learned it was Huntington’s disease after meeting one of his aunts, who was already in an advanced stage of chorea. Another aunt/uncle and one of their children were also affected. My husband’s father died in a car accident at 32–33, so we never knew whether he had inherited HD.

For years, I was afraid my husband or his sister might have inherited it, but somehow I always convinced myself it couldn’t be the case. They are both intelligent, grounded people, and there were no obvious signs.
Then, at 29, my husband was diagnosed with stage 3 non-Hodgkin lymphoma. We went through two and a half years of treatments, anxiety, tears and uncertainty, but thankfully he has been cancer-free since 2020.

After the cancer treatments, however, he developed increasingly noticeable movements during sleep. He talks clearly in his sleep and smacks his lips, mostly between 3–5:30 a.m. Over the past four years, I have also noticed movements involving his legs, hips and now shoulders. His sleep movements became so disruptive that we have been sleeping separately for almost two years.

This year, things started to feel different.
After Easter, he casually mentioned that he had lost his balance one evening. Suddenly, I started connecting everything: the movements during sleep, the hip and shoulder movements, a facial tic he has had for several months, and only now I really noticed it and also the balance issue he mentioned.
And I became terrified.

We don’t have children and had decided to try IVF last year, after finding our that my husband is infertile as a result of cancer treatments and that I have a very low ovarian reserve.
Thankfully, we had preserved sperm before treatment and after two ovarian stimulations and egg retrival, we managed to obtain one euploid embryo through PGT-A testing.
Now I realize that if HD is a possibility, that embryo should have been ideally tested for HD. But it has already been frozen after PGT-A, and I understand that thawing and refreezing is generally not recommended. So I consider we don’t have any and should start the process again from scratch.

Now I’m facing a question I never imagined I would have to ask:

If we have a child, would I want that child to grow up with a father who has Huntington’s disease?

My husband has agreed to schedule genetic testing, but we have only discussed it twice. It is incredibly difficult for me to bring up because every time I do, I break down crying.

He also doesn’t know much about HD or what a positive diagnosis could mean for our future.
I’m trying not to diagnose him myself, but honestly, with everything I’m seeing, I’m terrified that this is what’s happening. I’m also wondering whether his chemotherapy or other cancer treatments could have contributed to or accelerated some of these symptoms, or whether the age of onset is mainly related to the CAG repeat length.
His sister is 42, has no obvious symptoms and decided years ago not to undergo predictive testing. She now has a 2.5-year-old child.

And now I’m completely lost.

What the hell am I supposed to do?

Part of me wants to run away somewhere far away. And then I feel like that would make me a horrible person and a terrible wife.

Staying feels like the right thing to do — morally and because I love him. But at the same time, I have this horrible feeling that it would destroy me.

We have worked very hard to build a good life together. We are ambitious, we love traveling and enjoying life, and we still have so many things we wanted to do together. The thought of potentially losing him (and see him degrading over time) and that future is devastating.

I’m not a person who falls apart easily. Life has thrown a lot at me and I’ve always managed to deal with it.

But this feels too big.

So I would really appreciate hearing from people who have been in a similar situation:

How did you deal with the period of uncertainty before your partner was tested?
How did you approach the conversation about predictive testing?
How did you make decisions about having children when HD was a possibility?
If your partner tested positive, how did you deal with the fear of the future?
And, perhaps most importantly, how do you survive the waiting and uncertainty without completely falling apart?

I’m currently crying constantly and I’m genuinely afraid that if I don’t find a way to calm my thoughts, I’m going to end up in a deep depresion - my therapist is enouraging me to open up about this and not carry the burden alone, but inside the cuple. It just feels so hard to be the one opening the hard subject and bringing the potential bad news to him. He has a very strong, positive mind and attitude, even during cancer, he was super positive and put all into healing, but, I fear this time will not be the same.
He says that me being strong during his cancer treatments helped him tremendously, but seing me so down would not help.

I would really appreciate any honest experiences, especially from partners who have been where I am now.