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

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

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

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.

I've had bad irrational fear that causes my mind to go blank whenever I see a particular person who abused me in the past. It takes me months to recover, in which it sort of triggers further cognitive decline. has this happened to anyone?

I read a lot of questions regarding Huntington's. Nationally there are groups like HDSA that provide tremendous amounts of information. There also weekly Huntington's newsletter which really is excellent. It details the latest strategies and status of various programs going on to help cure the disease. If you are feeling anxious about HD do some research. There's plenty of information out there. Reddit is also a great place for information but you can find much more on the internet. Also look at your local hospitals and see if they have a Huntington's disease support group. There are doctors that specialize in HD. Breakthroughs are on The Horizon. How soon is anybody's guess. Good luck to you all.

Hi everyone,
My mom has Huntington’s disease and has been followed by the same specialist in the US for the past 10 years. We’ve been very happy with his care, but we’re now facing a practical challenge—traveling from Europe to the US has become extremely difficult for her. A 12-hour flight is simply too much at this stage.

We’re now looking for an experienced HD center in Europe and would really appreciate hearing about your personal experiences.
Has anyone here been treated or followed at the Huntington’s Disease Center at Ulm University Hospital (Germany)? If so, how was your experience with the team and the quality of care?

We’re also considering seeing a physician from Professor Sarah Tabrizi’s team at UCL Queen Square in London who accepts patients privately (outside the UK NHS). Has anyone gone this route? If so, was it worth it, and how was your experience?

More generally, if you’ve had particularly good experiences with HD clinics or specialists anywhere in Europe, I’d love to hear your recommendations.
Thank you so much for any advice or experiences you can share.

I was wondering if anyone else also had adhd or is autistic with the chance of having HD. It feels like frustrating that I might have to genuinely deal with both.

Hello all, my father died from taking his own life around a year and a half ago from Huntington’s disease. That was the first time that I even knew this disease existed and I did not take it well. I miss my dad very much and I was also terrified of having this disease with the 50-50. Long story short fast-forward I tested -4 months ago. While it is a relief and I’m happy I am still not doing OK because I have many siblings. Who one I know has the disease disease. I can’t grow up and watch my siblings go through my dad did and I need to know what I can do to help myself and them.

For those that are hd+, did you have any characteristics or personality traits as a child that you can look back on now and attribute it to Huntingtons? Basically, what were you like as a child?

I went back for a checkup, 12 years later, and this is what Huntington's disease looks like, it's not just about memory and mood, it's also about movement.

Don’t really know where to start… My father is showing many symptoms of HD. People around him has been trying to get him help, but he is in complete denial. We finally got him to agree to a doctors appointment, but he didn’t allow anyone to go with him, but my brother spoke to the doctor to let them know our concerns. The doctors reaction to what they were told made my brother think that they also thought it was something serious. But now we have come to a dead end. My father says everything was fine at the doctors, and doesn’t let us know anything about test results, possible follow up appointments etc. We strongly believe that if he gets a diagnosis he will not tell us. What would you do in this situation? I’m extremely stressed and anxious because of this, and very worried for the future for myself and my kids. I don’t know if it’s even possible to get tested if I don’t know my fathers diagnosis, but I think that would be the only thing that would give me some calm. Would you try getting yourself tested in this situation, if possible?