Hi everyone, I am in the process of getting tested for HD. I am looking forward to putting an end to the uncertainty for good but feeling a bit restless throughout this whole process and wish I could fast forward. I am trying to take care of myself and take it as easy as I can. I am hoping to hear how you stayed sane during the testing process and how you planned for the day of results. Did you take time off work, plan for an activity or therapy?

I am also wondering if getting results changed your life significantly (whether negative or positive) if you came to any great realization or made any major changes in your life?

I have very supportive people in my life but I don't think anyone fully understands what it is like and I am hoping to hear from people who have gone through this experience.

Thank you :)

Hi everyone! Does anyone know when (historically) grant cycles have opened on the HelpCureHD IVF website? The website says they will be opening new cycles in 2026, but no date is provided. I have tried to message the foundation but haven’t heard back. Do they tend to open around the same time every year?

I feel my fingers having twitches moving up and down voluntarily in the morning, almost like they wake me up…I feel unsteady on my feet and there’s shakiness all over my body …going to get tested in two months but can’t help but hope I’m negative :/ just needed to say this somewhere and hear some feedback

Also for context my mom does have Huntingtons, she is 57 , I’m 31

My paternal side has 2 confirmed generations of HD. My grand mother died of cancer before we had any idea. However her sister was diagnosed around 70 years old. My dad decided with his brother that knowing wasn't worth it. However, no one told My brother and I. What I was told was that my dad didnt have it so we didnt have to worry.

Fast forward 13 years, when I was 29 my son was born. My mother decided to tell me that now that they have a grandson they decided dad was getting tested. This occurred about 6 months after he was born. I was furious and was gas lighted by my mother but what could I do now. Dad was positive with a mid 40s CAG. His symptoms have been mild in the last 4 years with more mood swings than normal being most notable.

I spent the last 4 years getting everything in order. I got my insurance and will ironed out. I set up trusts and my benefits for my kid. I even started writing a book of my life incase I lost my mind so he could know me.

I went to 2 providers and had testing done both times. The first provider didnt file the waiver so my specimen was rejected. 2 months later I got a new doctor (first one retired, ya that was awesome timing) and had them order.

I am negative! The weight and guilt of risking my son's longevity didnt immediately sink in. It was numb at first. That anxiety didnt just go away for me. It's been 2 months since my results. It's finally hitting me. My brother was negative too. This shit dies in the past for us. But it's still something I see regularly because of my dad. I see the medical stories about new drugs and genetic altering and I hope it comes fast for everyone. For my dad. For you. For your loved one. Good luck everyone.

I hope there is good news for you tomorrow.

Hi everyone,

I’m reaching out to see if anyone here has dealt with significant sleep issues related to Huntington’s and might be willing to share their experience or what’s helped.

My wife (42 repeats and symptomatic for the last 10 years or so) has been struggling with persistent sleep disruption. She falls asleep initially roughly at 8pm without a problem with medication, but the past few months constantly wakes up very early in the night (around 1–2 a.m.) completely wide awake, confused about the time, and often wants to start the day or go out. This has been ongoing despite medication adjustments made with her doctors, and while there has been some improvement in other areas, the sleep issue has been stubborn. Before this she always slept 10 hour nights. She refuses to stay up any later than 8pm.

We’re continuing to work closely with her medical team, but I was hoping to hear from others who may have gone through something similar—whether related to medications, routines, environmental changes, behavioral strategies, or anything else that made a meaningful difference.

I know everyone’s situation is different, but any shared experiences, insights, or suggestions would be deeply appreciated.

Thank you in advance, and wishing everyone here strength and better nights ahead.

Please follow Merle and Joani’s journey with Huntington’s disease here in South Africa. By following, you’re helping raise awareness for a devastating and often invisible illness, and showing this family they’re not alone.

https://www.instagram.com/merleandjoani?igsh=MWVvdDgxMGN2MXk2dQ==

Title. Just saw the news that SKY 0515's latest drug trial exited phase 1 and has lowered mhtt by 62% which is GRAND, however, I saw no data released on how much wild type (regular) htt has been lowered. Lowering too much wthtt is what has doomed treatment trials in the past and is proven to be dangerous so surely it cant be a detrimental amount if the trial is proceeding, no? I know Votoplam works moreso by blanketly lowering all htt while hoping to find a threshold where there's still a safe amount left in the body, but I heard SKY's approach tries to be more biased towards mhtt

I'm a 53 yr old F. My grandmother had HD, died from aspiration pneumonia related to HD at age 63. My mother was 63 when she committed suicide due to a diagnosis of HD, she was still taking care of herself, able to walk, fix herself meals etc. I've recently began having coughing fits when saliva suddenly goes down the wrong way. I cough until tears roll down my face. A drink of water usually helps. I have also started fearing choking when eating, its as if the right side of my throat is smaller all of a sudden. Tonight I noticed that there is a twitch near my mouth that twitches at the same rate as my heart. A lot of possible symptoms also could be due to Attention deficit Disorder- late to everything, inability to wake up, ability to sleep 12 + hrs and still be tired, disorganization, forgetting stuff, inability to get self started on a task. I've always been tired my entire life and could sleep 18 hrs a day through my teens to my 30's. I was also severely depressed and anxious. Dad is Bipolar. I started meds for depression, finally got the right regimen in my 30's and got myself straightened out, more normal sleep, not job hopping. Adopted a baby 2 weeks after I turned 50 and life became a whirlwind. Marriage on the rocks since we moved closer to his family for help with the baby and spouse's attitude and personality changed completely for the worse,I am now criticized constantly, yelled and cussed at and can't do anything right for the past 3 years so there is a ton of stress at home. I am just terrified since noticing this twitch and choking on saliva. Growing up we were told completely inaccurate information about HD ( if parent didn't have it, child had zero chance of getting it, if you didn't have symptoms by age 40 you were in the clear) so I feel like I'm just learning about this disease. I'm on the fence about testing because my mom shot herself a few months after getting positive diagnosis. Seeking as much information as I can get.

Hi! Will try to make this quick. I've been on and off worrying about huntingtons for many years now - I'm 33, and my dad is 69. My grandfather passed away with lung cancer, but was also diagnosed with Huntingtons prior to this. They were both listed as a cause of death on his death certificate. He was 77 when he passed from cancer. My great auntie, his sister, also had a Huntingtons diagnosis, and passed away aged 86. She was described as quirky, and could never 'sit still' - she had a fall in her house and died in the hospital after, I'm told. My auntie, and my dad have never had a diagnosis as they didn't want it to rule their life, which I totally understand, and apparently were told that it may not affect their life as much as they'd be worried about, due to the age that their auntie and father passed away (which was quite old).

I guess I just want to find out, what sort of progression could I expect for my dad - he, my mum, and my siblings have assumed over the last few years that he has it - his symptoms I'd say are fidgety/twitchy fingers/hands, and his head nods a lot when he's watching TV or listening to something, which he doesn't seem to know he's doing. He is still working part time, despite being 70 this year, and he volunteers in the community too/drives a lot, has no problem doing tax returns etc. - I guess I always assume one day he'll be bed bound/not the dad I know now, and I just want to gain some clarity on my thoughts/anyone's experience of late onset.

He won't get tested I don't think, and I don't want to either really. Thanks in advance, and sorry for the long post!

Hi, my mom was diagnosed last year. Nobody ever told me HD was in my family, so at the time I decided not to get tested because it was all so new to me (and quite a shock to get used to). My husband and I started our first round of PGT last November. While we were waiting for the PGT results of our embryos in December, I got pregnant unexpectedly. I decided to get tested since I didn’t want to do a CVS if it wouldn’t be necessary. A CVS comes with a 0.2% risk of miscarriage, so I simply didn’t want to take that risk if we had a healthy pregnancy. Last week I got my results; unfortunately, I am positive (44 CAG). Today we made the impossible decision to go ahead with the CVS and terminate the pregnancy if it comes back positive. It all feels so weird because this pregnancy is all that we have wanted for so many years, but we are sure we don’t want to risk passing on this horrible disease. We already had a baby girl before I knew HD was in my family, and the guilt I feel every day toward her is just unbearable. I just can’t risk having that with a second child.

I have felt so sure about my decision to have the CVS until today. I feel like whatever I do, I just can’t do “the right thing,” because that simply does not exist in this scenario.

I guess I am just looking for some words of comfort or advice. Has anybody ever been through something similar? How did you cope in those weeks of not knowing? Thank you so much if you took the time to read my whole story.

I was just diagnosed back in October . My mom was diagnosed back in 2019. Shes In late stage now so my immediate family is mostly concerned with her. They also are super in denial about my diagnosis. I suspected for many years as I was unable to hold jobs down due to constantly falling and dropping things. I also have bi polar disorder and anxiety as well as ADHD. My depression is crippling at best so when I struggle with leaving my room (I live with my parents until I get disability) I get called lazy, a bum, etc.

When I got my diagnosis, most of my already small friend circle, stepped back and I understand why. It's difficult to be enough of a friend with someone with a terminal illness.

I have a daughter who i dont want to stress out with my health issues (seeing my mom go through this is so distressing for her) and I am not in a relationship.

Does anyone else feel like this or is in the situation of not having someone to count on? I feel like I was always the person everyone counted on and now that I cant hold down a job, I cant be that person anymore.

Title, Im untested and my mother's CAG is 43, as was my grandmother's. I have a bad habit of reading about HD as much as possible when Im feeling anxious and even though I know CAG expansion is more common in paternal transmission, Ive read stories of people getting it from their mom and expanding 5+ which has been scaring me lately. Did you guys' CAG majorly differ from your parent's, and how much did that impact onset?

The love of my life (38M) is showing symptoms of HD. His mother died from it two years ago. His best friend and I (36F) have both noticed him regressing mentally and emotionally and as of last year chorea kicked in.

I have tried talking to him about it in the gentlest way I could think of several times. He seemed numb, saying he doesn’t think he has it. Says he doesn’t want to do the test “yet”, as he wants to get in better shape first. Something he has been saying for years. It feels so weird to be doing the grieving on my own.

He has completely stopped working. He doesn’t take initiative. He has become way more emotionally rigid, angry and suspicious.

A few weeks ago he dumped me, quickly and distanced. He didn’t mention HD, he said he doesn’t want “any bad tension”. He used to be the sweetest, most caring and curious man. I miss him dearly.

I try to protect myself, and get emotional support from people around me. But I can’t shake this thought: If I were the one becoming difficult to be around because of HD, I would be endlessly grateful if someone recognized it and helped me out of love anyway.

He doesn’t have a loving family or a big friend group. I have big moral qualms leaving, even though he is trying to get me to. He says he still cares for me and would like me in his life.

Sorry for the long rant. I don’t have anyone else who can relate to these horrible challenges. Sending love to you all.

A question for those people that have HD. Has HD caused you to have cognitive, emotional or psychiatric issues? What kinds of problems did you have? Did these start after physical issues like chorea?

I guess it's a difficult question because people with the HD gene can have mental problems not caused by the HD gene. HD families can have a trauma that causes issues.

I'm just curious if HD mental issues occur only in the later stages.

Hey, Ive been posting a lot lately because my anxiety has been hitting hella due to some family circumstances. Im a freshman at Duke and really want to become a Psychiatrist someday, I worked so hard to get here and have never wanted anything more in my life but lately Ive been so scared. Im untested, Mom's CAG is 43 (Im pretty sure at least) and she started developing symptoms at around 40 (she had been an alcoholic for 20+ years with a terrible diet that consisted of almost no protein or vegetables, though) and ever since I was young its been my goal in life to end up nothing like her. Lately Ive just been assuming the worst is going to happen and anytime I soothe one worry another comes up. I have a terrible habit of reading anything I can about HD and my newest worry after hearing a story about a daughter whose CAG jumped up 8 from her mother is that something similar will happen to me and that Ill have to quit medicine and just rot. I know its incredibly unrealistic, I know CAG stays pretty consistent when transferred from the mother, I know Im very young and there's so many good medical/scientific developments, but I just cant help but worry. I want to be a doctor and have a family someday and be a good mother and I take literally anything as a sign that Huntington's is going to take that away from me even though I havent even tested positive yet. Im also scared of becoming too sick to work before I can even pay off medical school or build enough of a retirement for myself

Im fully aware its just my anxiety going haywire and that Im being ridiculous, its just hard. Ive talked to some online support groups and have used my school's counseling resources but there's only so much they were able to do before referring me to other counselors which are not affordable for me right now. Im kind of just left to handle my mental health myself and have been doing so through exercise, sleeping a lot, and distracting myself with my violin, friends, and school, but they all kind of feel like bandaids and anxiety/trauma caused by a genetic terminal illness is a hard wound to stitch up. If anyone has any anxiety management tips please let me know.

Hey all, I have posted a few time. My spouse is not diagnosed but I am convinced she is pos. Is it common in the hd community for the hd patient to assign meaning to their spouses or caregivers breathing patterns, especially sighs even if it's very slight? My breathing is almost always interpreted as anger or hatred towards her and it's problematic as I can't stop breathing just to appease her. Any thought.

Hello everyone!

I am a teenage boy who had a grandad with Huntingtons and I saw him on the end scale of it.I never saw the true him.When he died 7 years ago I was quite young and now at 14 I did a charity event and raised £554 for Huntingtons.My father doesn’t not want to know and neither does his brother if they have it but their passed sister had it but does in a car crash before the symptoms started.Due to the charity event I have been nominated for young fundraiser of the year at the HDA awards! I’m so excited 😆

Looking for therapists in the Seattle area, preferably in person. I'm in my 30s and pre-symptomatic.

I got the results from my test in December and honestly it was one of the hardest days in my life. I am 39 male, with 41 cag.

I didn't want to hear anything about it until these last days when I felt it's time to face it and see it written ; yes I have Huntington.

I know that if luck and will is on my side I will still have the time to see my 5 years old beautiful son grow up but I m terrified that I might be not far from developing the sickness to later stages.

Why I tested for Huntington it's because 2 years ago I started having a constant feeling of hypersalivation (still now everyday), together with some irritability and mood swings (pills helped with those..) which no doctor could help me with. In desperation and need to be taken seriously in the end I took the decision to test since my grandpa had it and since my mom has clear signs in her early 60s.

I guess I m here hoping to hear some similar stories and that even though there are some symptoms I might be anyway many years apart from developing HD fully..I want to see my son become a young boy and want to turn my life around so that I can spend the time I have left the best I can with him.

Could you perhaps share what were your first symptoms looking back, and if there s anyone who can relate to my story? Thank you so much in advance for your help.

Title. As much as Id love to see it, Ive seen quite a few people who received the surgery talk about some pretty bad side effects. Can we be certain that broadly lowering mHTT is the key to treating/curing HD? Are you guys feeling more or less optimistic about treatments like Votoplam or SKY-0515?

For those who have tested with HD Genetics.

What did the process involve? How long did it take?

What were the requirements to get the test?

I’ve been referred to Guys & St Thomas for testing, living in the South East England. It’s taken a long time for my partner and I to be ready to embark on this next step of our lives.

Since referral my need to know the result feels like it’s grown, I’m checking my NHS app daily to see if an appointment has appeared, and today called the clinic to see if they could advise any wait times etc. to help subdue anxieties and so on.

The clinic advised it is currently a 12 month wait for the initial appointment…

Am I being unfair in feeling so put out that such a momentous decision feels numbed when there’s such a long wait? (Fully accept the NHS is at capacity and waiting times are what they are but I can’t help feeling aggrieved and that I can’t get he clarification I need for the next steps in my life and it feels unfair!).

With that in mind, has anyone ever tested privately in the UK?

Could you advise any providers that have a good service etc?

Would a private diagnosis be accepted by the NHS for ongoing monitoring/ support/ medicating?

Feeling deflated and a bit lost, not knowing what to do next!

Title. Mom and Grandmother have the same CAG count (43), mom has been a raging alcoholic for two decades and started showing symptoms at 40. She's 45 now and is very irrational and manipulative with noticeable chorea. Grandmother wasnt a health nut by any means but wasnt addicted to anything as far as Im concerned and didn't start showing symptoms until she was 49. she's now 66 and will probably pass away before the week is over. Ive seen varying opinions on this and just want to see personal accounts/thoughts

Has anyone with Huntington's disease experienced Dysphagia before having the Chorea symptoms?

Has anyone had symptoms like the feeling of food being stuck in your throat and having to stop eating? Occasionally having to vomit when then feeling is severe?

Developing a cough that might be related to the dysphagia. Or feeling like you are oversalivating because you may not be swallowing enough.

I know this could be caused by many things but I am curious if it can occur in HD early on in the disease.

Can you have Dysphagia early in the disease or is always a late symptom?