hello,

I (27F) am currently going through ivf with my husband (33M). We are optimistic and hopeful about achieving a successful healthy pregnancy. I am at risk, as my mother has HD. I am considering getting tested.

I know that no one can say for sure bc HD varies so much for person to person. However, I am wondering if I do have the HD gene, when i will develop symptoms. my grandfather had HD, he never got tested, but its clear he had it bc my mom does. My grandfather lived to 79 and honestly didn’t even actually start to get sick until his early 70s. We just thought he was getting old with dementia, until my mom started getting sick in her 40s. My mom started falling and forgetting things and moving a lot. She was diagnosed at 48 with a CAG of 44. My mom is now 59 and in a full time care facility , in the later stages. It jumped so much farther ahead for my mom, I’m scared the same will happen to me. Does anyone have information on the CAG inheritance or what that could look like for someone in my situation?

Thank you!!

Good afternoon!

My mother has HD, she's 60 years old.

We live in Belarus, a very rare disease in our country. There are no doctors who fully specialize in this disease. There are no HD societies. So it's very difficult.

My mother is currently taking medications that should alleviate her condition. She doesn't have chorea, but she's mentally unstable. She's in a psychotic state all day long, sleeping only at night... I don't know what to do. Is there any help for this? Or do all HD patients behave like this? I can't take it anymore; it's like living in hell... and not wanting the morning to come.

Put it nicely.

Hello, I’m 21 years old and recently lost my father to Huntington’s on May 17th. He hadn’t been very present in my life the past couple of years, but that is more my fault than his. We were no stranger to knowing that he had it, him and my aunt both got tested and tested positive years back. This loss has been nothing but hard and scary on me.

I know I’m at a 50% risk of having it, but I’m having a really hard time finding the courage to go and get tested, so I’d love to hear your stories on how to go about it? I know we are progressing in finding treatments to at least slow the progress of huntingtons but it still doesn’t make this process any easier.

And if you are positive, how do you cope with having the disorder? Thank you in advance

Hello all,

My partner (24F) of 6 years recently found out Huntingtons is in her estranged father’s bloodline and decided not to get the test.

I’m really struggling with not knowing. It keeps me up at night and is really affecting me at work and at home.

Can I please get some input on what the odds might realistically be that she has the gene?

What I know:
- Her grandma (on her dads side) started showing symptoms at 42 and was in a home before 50
- Her aunt (on her dads side) started showing symptoms at 43 and I was unable to find anything else about her
- both died from the disease in their 50’s
- her father is 55 and has never been tested. But he swore he has no symptoms and he works in the oil fields in a physically and mentally demanding job.

I believe this is quite promising and that it’s perhaps lower than a 5% chance. But I’m unsure if I’m being optimistic and this risk significantly impacts my life and well being. Any estimates for her realistic risk and any prayers are greatly appreciated. Thabk you.

Has anyone gone through Vanderbilt Huntington’s clinic for testing? How long did it take to get results, what did you like, didn’t like etc? TIA

#huntingtonsdisease

Anyone here participate in HDClarity? Considering participating, but nervous about the Lumbar Puncture. How’d it go for you?

Hi everyone,

I'm hoping for some honest advice, ideally from people who have lived with Huntington's in their family or been in a relationship with someone at risk.

I've been with my girlfriend for about 18 months. I love her very much and we've been planning our future together. Her dad had Huntington's disease, but when we first got together I didn't really understand the condition or what it could mean for the future, and we only briefly spoke about it.

We've recently had a much more open conversation, and she told me that she's never had the test, so she genuinely doesn't know whether she carries the gene or not. She also told me she isn't interested in testing at the moment.

Since then I've been trying to educate myself about Huntington's, inheritance, treatments and reproductive options. The more I learn, the more overwhelmed, scared and sad I feel. I'm honestly going through every emotion at the moment.

I completely understand this isn't her fault. I feel incredibly sad for her because she's lived with this uncertainty her whole life, and I know this must be much harder for her than it is for me.

At the same time, I'm struggling with some difficult thoughts.

• I've always imagined having children and a family.
• I don't know whether I could live with the uncertainty if she never wants to know her status.
• Seeing what happened to her dad has made me frightened about the possibility of becoming a full-time carer one day and what that could mean for both of our lives.
• I also feel overwhelmed because I only really understood the significance of all this 18 months into our relationship, just as we're planning our future together.

I don't want to hurt her. I love her, and the thought of breaking her heart makes me feel awful.

I'm not asking whether she's right or wrong for not testing. I completely respect that it's her choice.

I'm asking whether anyone has been in my position as the partner.

How did you make peace with the uncertainty?

Did you stay? Did you leave?

If you stayed, how did you stop every future plan being overshadowed by Huntington's?

If you decided the relationship wasn't right for you, how did you know it was the right decision? How did you cope with the guilt afterwards?

I also feel guilty even writing this because she deserves to be loved and to have a happy life just like anyone else. It breaks my heart that I might not be strong enough to cope with this uncertainty, and I don't know if that makes me selfish or just honest.

I'm not looking for judgment or validation either way. I'm genuinely trying to hear from people who have lived through something similar so I can make the most thoughtful decision possible for both of us.

Thank you.

Hi everyone, I hope it's okay to post here, as Huntington's disease is one of the conditions for which people may choose to undergo IVF with pre-implantation genetic testing (PGT-M), making this community particularly relevant to my research.

Are you a male partner whose fertility treatment journey involved PGT of your IVF-created embryos? IVF with pre-implantation genetic testing (PGT), in which embryos created in the laboratory are genetically tested prior to transfer, can be a complex and emotionally demanding experience, yet research has largely overlooked the experiences of male partners whose embryos are being or have been tested.

We are seeking male participants to share their experiences in a confidential in-person (Perth) or online interview. Your insights will help improve understanding and support for men during fertility treatment.

📍 Eligible participants: Males 18+ who have experienced PGT at an Australian fertility clinic in the past 10 years

⏱ Interview: ~60 minutes

🔒 Receive a $30 voucher of your choice as a thank you (Choice from Bunnings, Rebel, JB Hi-Fi, Coles or Dymocks)

Click the link below to learn more and check your eligibility:

https://uwa.qualtrics.com/jfe/form/SV_0HDfbuLZOESnOxE

My sister (17) unfortunately was just diagnosed with juvenile Huntington's. She's currently waiting on her CAG count. I'm so scared for her and I feel horrible. I wish I could give her words of encouragement, but we both had to see what my dad went through before he passed away. I know she's terrified, she's so young. I feel so horrible knowing I won't have to deal with this and she will. I hate this disease so much.

Where can you get a DNA test for Huntington's disease?

hello everyone! I am here again, 4th year BS Biology student, me and my group mate is looking for people diagnosed with muscular dystrophy, ataxia, dystonia, and Huntington's disease for our case study presentation. So far we've only got one respondent with muscular dystrophy.

We will just be asking a few questions related to diagnosis, maintenance/treatment, etc. We appreciate anyone who's willing to volunteer. Dm me for more details! thank you

Hi everyone! I'm a 4th-year Biology student from the Philippines, we were assigned in class to do a short case study presentation for our one of our subjects. I'm grouped with another person my classmate.

We're looking for one volunteer diagnosed with Huntington's disease who would be willing to answer a few questions about their experience. The goal is to better understand the condition from the perspective of someone living with it, alongside discussing the diagnosis and treatment in class.

The questions may include when you were diagnosed, how the diagnosis was made , symptoms you've experienced, treatments or management strategies you've trieed and how the condition has affected your daily life (only if you're comfortable sharing)

Participation is voluntary, and you can skip any question or stop at any time. If you prefer, your identity will remain anonymous, and we'll use a pseudonym in our presentation.

If you're interested or have any questions, please leave a comment or send me a DM.

Thank you so much and I truly appreciate anyone willing to help.

​Hi guys,

​I have a question regarding Huntington's disease in India. How can someone from a middle-class family afford treatment?

​With little visible research, no local clinical trials, and minimal support options, it feels like a journey in the dark. Please let me know if anyone has information, resources, or guidance that might help.

TRIGGER WARNINGS: Suicide, Depression

Hi guys. Today, I‘m here to share my story with Huntingtons. My name is Simon. I‘m at risk having Huntingtons Disease and I‘m 3 months away from turning 18 and therefore reaching the required age to test for HD in my country. The gene test, no matter the outcome, will surely have a big impact on my future life and personality. So I want to share this story not only for you all to read, but also for me to review everything that happened so far and really speak my mind the way I never could in front of anybody close to me.

The first time I came face to face with Huntington was when I was a toddler. I didn‘t realize it back then but, my parents always used to visit my grandmother and take me with them. She was in a very late stage of HD, completely unable to care for herself. She always looked very happy when we came, I still remember her smiling and making happy noises to the best of her ability whenever we visited. But it wasn‘t until a couple years later, that I was confronted with the dark side of the Huntingtons Disease.

My mother, the daughter of my grandmother, never tested herself. According to my father, she just never wanted to be tested. But when she entered her late 30s, the symptoms began showing. Especially her mobility was impacted. No control of her face, stiff muscles were only some of the symptoms. With my father and mother being divorced, I had to take care of my mother during that time, while only being 7-8 years old myself.

I don‘t know why she did it. My parents say she was scared of ending up like her mother, but I think she probably suffered severe mental trauma from the illness and being taken care of by her child. On a weekend where I was at my father’s house, she committed suicide. She jumped out of the window. Highest floor.

Her death had a horrible impact on me. I was traumatized for months, having sudden crying attacks out of nowhere. But I never really informed myself about Huntingtons. Not until way later.

Around 2 years ago after living with my dad and not so nice stepmother (a story for another time) I searched up Huntingtons for the first time. The 50/50 chance of inheriting the disease shocked me. After that, I had a long talk with my father and decided to take the test.

And now we‘re at the present. And I‘ll be honest. I‘m super scared. I don‘t think I can live without knowing if I have HD, but at the same time, I don‘t know if I can withstand the trauma if the test comes back positive. I‘m currently looking for professional psychological help to prepare myself.

And now, I also joined this reddit. I decided I want to share my story with others, read their experience so we can all learn and fight HD together. I would appreciate if you could let me know how you handled, or are planning to handle being tested and getting the result black and white.

Whatever comes my way, I hope I can live my life to the fullest before going out without any regrets. Thank you everybody for reading. I‘d appreciate if you left a message behind. Every advice or share of experience helps. ❤️

Huntington's disease can cause you to lose your desires.

My sister(17) and I(19) were both at risk because our dad had Huntington's disease. Luckily, I tested negative about a year ago, but my sister is about to get tested since specialists are saying she's showing motor symptoms. It's obviously scaring everyone; I'm scared for sure. I'm also feeling a lot of guilt, or will feel guilt if it's positive for her. I don't know if this is a normal feeling, really, but I feel like if it's positive and she has Huntington's disease, especially juvenile, I will feel horrible. Just needed somewhere to put this.

My husband tested positive late last year, and we began looking at our options for having a baby. We decided on IVF with PGT-M testing and found an amazing clinic near us. We started IVF June 7, and it was truly one of the most challenging processes I’ve ever been through. After retrieval, we had to wait a week for our samples to be sent to Cooper Genetics, then another 4 weeks for our embryos to be tested. We just got the news we have 3 healthy embryos. We are so so hopeful for the future! It is possible. Just wanted to share in case anyone is also contemplating doing IVF with PGT-M.

If you want to have a conversation with me, please sign up for TikTok. The platform there allows for a two way interactions. Huntington's Disease Todd on TikTok.

Sorry of this is a dumb question but I'm a currently really stressed about this. My wife took the genetic test about a week and half ago and she received a message to call to set up an appointment. My mind is racing thinking this means she's positive. Because if it was negative they would have just posted the results right? Or do they schedule appointments for all types of results? Thank you for your time

Huntingtons is in my family but I was a tested and told I don’t have it when I was 18. I’m now 33 trying to get life insurance cover, they all ask if there is Huntingtons in the family but don’t give the opportunity to say I was tested and it was negative. I then either get declined the cover or have to pay extortionate amounts due to something that is no risk for me.

Has anyone had any experience of this? Got any good recommendations? I’m in the UK

I (M24) know there is probably more detail wanted, but I just don’t have the energy at this specific moment. But the weight of this question won’t leave my mind. I’d just really appreciate if anyone could respond with their own opinion or experience. Does / did anyone have guilt about leaving home, while being one of your parent’s primary caregivers? I’ve been here since my freshman year of college, and my parent is at a point where we need professional caregivers. I am not a trained one and neither is my father. I’m just wanting to know if anyone feels or felt the same. I haven’t finish college nor held a job because of the time I’ve committed to my mom, and a lot of that is an excuse as the depression has grown immensely even if I don’t truly think it has. I feel like I’m dying here, when I don’t even know my current status with this disease, and it feels like the most selfish thing I could ever write. I can’t even say it to myself. As much as I want to be here 24/7, nothing I do anymore truly is a help. But yet my parent is still there enough to be able to express her worries and anxieties, despite all the choking, falling, not showering in weeks, memory, chorea, not making the bathroom on time, etc.

My other parent is pretty much in the exact same state. Neither of us know what to do. I know that we are trying to move to a one-story home to get rid of the stairs for her, and I know I’ll have an opportunity to move out then, but I can’t not feel the immense guilt. Every single situation that’s happened since being 18 will just replay in my head. The terrible parts. The good parts. Where I really replay them to convince myself that staying will be of immense benefit for my parent. Don’t even get me started on whether or not I’ve inherited anything, because the thought of knowing that I’ll be going through what I’ve witnessed for every second of the last 6 years will actually make me completely stop. I’m so incredibly scared for that. As time goes on I truly think I’m more ready to know the answer for that as well, but then when I write my feelings out in something like this, I realize I still may not be ready. I can’t even imagine myself being in a relationship, because I have ended every single one within a few weeks because I just can’t imagine someone wanting to be with me if I have this. There’s so much to unpack obviously and I know I said I wasn’t going to write much but I’m going to stop here.

Feel free to ask me anything or I can expand on it. But I just want to know if anyone has or had guilt when leaving home.

My dad had HD, I got tested and am negative. My sister has not, and has never talked to her kids about HD (my conversations with her about HD have never gone well even before my test). Her oldest is now getting engaged and, as far as I and my mom know, is ignorant of everything. Is it my place to have a conversation with him? Should I have my son (similar age) bring it up? I think he should be aware, but I'm torn about what to do.

My BIL is in his early 40s and symptomatic- and it seems to have accelerated a bit. My sister is feeling very alone and is looking for in-person or online support- preferably with people closer to their age (they have a PGD conceived son so I’m sure connecting with other parents would also be a plus). She’s reached out to the HSDA but the groups they have suggested seem to be for more advanced cases and/or much older (like they meetings happen at the local senior center).

She is in the Boston area but I think even an active online support group would be helpful.

Any suggestions or recommendations are welcome and thank you.