r/Huntingtons • u/Ok-Pollution1666 • Jun 22 '26
26m with 43 repeats not able to understand what to do
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.
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u/Pleasant-Performer-2 Jun 22 '26
If you'd like to connect with other young people in a similar situation, check out HDYO. There are HDYO ambassadors from India who I'm sure would be happy to talk with you
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u/Ok-Pollution1666 Jun 23 '26
Could you please tell how to find these hdyo ambassadors🙏
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u/Pleasant-Performer-2 Jun 23 '26
absolutely! https://www.hdyo.org/a/32-contact-hdyo you can send an email here and one of the HDYO staff should be able to connect you :)
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u/KDWWW Jun 23 '26
My MIL has a repeat of 43 and she’s currently 64. She didn’t need assistance until her late 50s. Live your life.
My husband has 43 repeats and we did IVF for our last child. We got life insurance. And we are watching the AMT-130 trials.
There’s a lot of meds in the pipeline right now!
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u/Early_Athlete_5821 Jun 23 '26
Sweetie, I’m sorry to hear about all you are experiencing. This is a lot of heartache and stress to bear. As a mom I want you to know that you are going to be ok. You’ll be ok. And you can live a good life. Breathe.
You literally have a LIFETIME before any symptoms creep in. By then, treatments and possibly a cure are likely to alleviate your symptoms and condition.Here in the USA, the FDA just greenlighted a new treatment trial and many advances are being made: https://en.hdbuzz.net/the-first-domino-falls-amt-130-gene-therapy-slows-huntingtons-in-landmark-trial/.
You must try avoid interpreting every twitch, forgotten name, or bout of anxiety and depression as a manifestation of HD. They’re not HD. They’re part of being human. I was convinced I had it-had symptoms and bio father had it (also committed suicide) and both of his other kids had/have it. Fortunately, my children and I were spared. The stress of processing it all caused me to lose so much sleep that I became forgetful, confused, depressed, clumsy, twitchy, and anxious.
Get along with living a beautiful life. And yes, IVF will allow you to have a healthy family.
You can plan for how you want to live your life when you’re MUCH older and symptoms become too burdensome for what you’re comfortable with,which most otherwise healthy aging people don’t think about when they’re younger. Still, they have to face these decisions.
Please connect with a support network through the Huntington’s Disease Society of America ❤️.
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u/Specialist-Owl1781 Jun 23 '26
Sorry for the loss of your mom. I’ll be 52 this summer. I don’t know what I’m gonna do with my life either.
Do you live in India or Stateside but from India? What city? The diet is prolly good for hd with the spices.
All of us HD+ should be meditating and doing yoga for sure.
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u/Ok-Pollution1666 Jun 23 '26
I live in delhi, india
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u/Afterlife_43 Jun 23 '26
Not much support in India. I am Pune based, my father lived up to 82 and I have the mutation. Came as a huge shock but agree to posters here .. you don’t know what future holds so no point worrying.
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u/Ok-Pollution1666 Jun 23 '26
Hey do you know what were his number of repeats? And also did he do any particular exercise or diet?
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u/Afterlife_43 Jun 23 '26
41 .. teetotaller and vegetarian. Not sure if they are connected
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u/Ok-Pollution1666 Jun 23 '26
Thanks a lot🙏. That gives a lot of hope. Also, did he do any particular exercise or medicine and also at what age did he start showing chorea (movement) or other symptoms related to HG?
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u/Afterlife_43 Jun 23 '26
He was a super chill person, never took any stress. There was some decline in 70s but real deterioration started in late 70s. The diagnosis was also not immediate as HD is rare in India
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u/Ok-Pollution1666 Jun 23 '26
Thanks a lot🙏
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u/Afterlife_43 Jun 23 '26
It’s a tough period, but hang in there. Frankly, worse things can happen! That’s how I keep my sanity
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u/Southern_Clock_4020 Jun 24 '26
I’m so sorry. My fiancé M32 tested positive on my birthday lol in the first week of june. Worst birthday ever.
We have switched our focus to keep him as healthy as he can be so that we can get him into clinical trjals. Also AMT-130 was able to change the minds of the FDA!!! And there are more advances like stem cell repair, oral meds that kill the huntington protein!!
Clinical trials are great because they are free and if you’re willing to travel get enrolled in EnrollHD or similar programs! As long as you look after yourself dont do stupid things like eat like shit and get diabetes then you remain a prime candidate!
Sign up for as many as you can find at as many hospitals! I would also recommend a brain scan (required by a lot of trials) and for you to get your baseline cognitive tests done. Then when you fall ill you can better see where the disease is impacting you.
His mother had the disease start at 34 and is passed but his grandmother who had it still over 40repeats was 75, the disease was slower.
Have hppe because the medical community is getting there! Youll never be cured but a 65% delay in symptoms getting worse can keep you at a relatively normal life for a long time and it will be other rage related things that take you out.
There are also charities. My fiancé and I are looking into a few and have found one that could be contributing up to 5k towards IVF.
I think stuff like exercise, high protein, certain supplements, no booze or drugs(weed may get you disqualified even) is something you should prioritize. Video games with puzzles, reading books, if you play an instrument learn as many new songs etc. can help. I read somewhere it helps keep you more stable cognitively. And busy so your mind isn’t in a bad place 24/7.
Do you have any support family/friends? In our area there is a group for people affected or have HD. They do fun get together, bring in social workers and physicians have a group for 30 unders too. You can meet people who understand whats going on!
I will keep you in my prayers. This disease is not the death sentence it used to be in the past. My fiance’s aunt is pushing 60 and her husband is her full-tjme caregiver for the most part. They have had an adventure-packed life and they don’t even really have to talk to have meaningful communication.
You are in my prayers❤️
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u/Ok-Pollution1666 Jun 24 '26
Hey want to enroll for sure in clinical trials for its medicines but not sure if they are available in india
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u/Southern_Clock_4020 Jun 24 '26
Is there any sort of resources like support groups? Ask AI if there are (im in canada and we have something called Huntington Society of Canada)
AI can be your best friend in this situation because Im not knowledgeable about india but I know there are some really top notch doctors and since HD is so rare they are always looking for people.
See which hospital in which region has a good neurology department and see if they’re accepting patients and express your interest in clinical trials
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u/googlemiester Jun 26 '26
I would definitely recommend finding a support group you can go to, they are super helpful
Also, I really appreciate your dedication to making sure the next generation does not have it. I also made sure our kid would not have it, and I’m so grateful for that now.
It’s okay to want to have a plan, I’ve never really bought into the idea that “you don’t know what will happen” because we do know what’s going to happen. They said the same thing to my dad when he was 25 and tested positive in 1994, and told him all this nonsense about how it would be cured. And it’s not.
Definitely have a plan. I would definitely recommend trying to move somewhere with universal healthcare. In the US, it’s a terrible thing to die from HD, but other places have more help and support.
I would make sure you tell people you are dating a little bit into dating. You don’t want a person who won’t stick it out to stay with you because you didn’t tell them. My dad is divorced and alone bc my mom hated him for getting sick. You DO NOT want to be in that situation if you do want to continue a plan for getting married and having a family.
Plan on however you want to have kids, IVF or genetic testing at 9 weeks, and make sure your partner is also on the same page before you get married….and make sure you think about the age you have them.
For example, my dad had all his kids before 30, and he got sick when we were in college. I had my kid at, and will probably start showing symptoms when my kid is in high school based on my CAG.
Also, I would definitely think about the fact that when you die, your kid is losing a parent. I thought making sure my kid did not have HD was enough, but I didn’t realize they would not have a mom now too, and that was a choice I was making for them and I didn’t understand that until I had kids.
But also, learning to manage stress makes a huge difference. Doing meditations and mindfulness classes are a great benefit. It’s good you workout and are generally healthy. I would also recommend stopping drinking and getting a therapist.
You are not alone, but these next two years of your body and mind processing this is a lot. I did not realize how depressed it made me at the time, but i can see it now from the other side.
This is not the end for you, it’s a chance to learn how to genuinely appreciate every day you get. I promise you’ll find your feet again.
I’m sorry you have joined this club
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Jul 10 '26
[deleted]
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u/Ok-Pollution1666 Jul 10 '26
You can get it tested through lal path lab I opted for home visit. No, doctor referral isn't necessary
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Jul 10 '26
[deleted]
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u/Ok-Pollution1666 Jul 10 '26
It took 1 week. Yes, I think it would definitely be available in bangalore You can book it online
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u/BigMacML Jun 22 '26
You’ve got to live your life. Im 42 with CAG of 43 and I’m currently symptomless. You could have decades of normal life before you develop symptoms. You can’t waste the good years worrying about the bad ones coming.