Huntington's Disease Predictive Testing - Matt's experience

HDYO founder, Matt Ellison, sums up his reasons for getting tested and his experience of the testing process for Huntington's disease. This video was filmed as part of a training program for genetic counsellors in the UK. Please consider making a donation to HDYO here: en.hdyo.org/ev...

[@honpaul2203]

what a strong person... it's really impressing. I'm sure he goes on with living his life bravely like he did before.

[@Kath6613]

I admire your courage and tenacity to devote your life to advocating for HD and improve the lives of other young people through education, support, and advocacy. You are not alone! Bless you Matt and all the good work you do.

[@8888-9]

This young man is so likeable I wish him and his family every good 🌷🌷🌷✨✨

[@desertbreeze69]

What a beautiful person.

[@tinamariefarmer4419]

i have Huntington's. i was pregnant with my 3rd when i found out that hd is in our family. i was in the Army and i knew that there were reasons i was having problems with running. i knew i wasn't lazy. i just couldn't pass my run scores. i didn't find that i had hd till a few years later. i have mixed feelings. i know that my problems no one else can see are real and not my fault. im open with talking to people about my problems and why i react a certain way. i think a really big problem is that people look at you and don't 'see' that you're sick. they don't understand. people who see me just think im drunk or crazy. i try to show them things online explaining what im coming from. but that totally underestimates what im going thru

[@houseofmatrix6174]

Im sorry to hear that

[@melanielifer7207]

Hi Tina I was no diagnosed this year I am 44 years old and my cag is 45. My Dad died in 1993 when I was 15. He Was 44 My Grandfather had it and he died in his 70. 😇💙🙏

[@visionvixxen]

That is so hard.🙏. With many neurodegenerative diseases- chronic and even doctors may not diagnose until the very obvious end. Prayers for healing and understanding of others.

[@tinamariefarmer4419]

@@visionvixxen definitely and tu

[@tinamariefarmer4419]

@@houseofmatrix6174 ty

[@Hoodoo123]

This man is amazing, his strength of character is so impressive. Brilliant.

[@DClean]

Good for you Matt. Respect your tenacity

[@jefftownsend2796]

I can relate to your story. My mom passed away from hd in 2009. I was tested and found out I would not develop the disease which was a relief. now my brother was diagnosed with hd and he is taking it very hard. I support him as much as I can. it is a very hard disease to cope with at times but we find the strength to fight.

[@salvadorhirth1641]

Hello, I hope your brother is alive. I want to help. I may have understood more about the cause of Huntington's disease than most. So here you are the result of my months of research: I believe that the drug Decitabine can slow down Huntington's disease; ( talk to doctors about this) Important things to remember about the side effects of Decitabine: You will not get all of the side effects mentioned below. Side effects are often predictable in terms of their onset, duration, and severity. Side effects are almost always reversible and will go away after therapy is complete. Side effects are quite manageable. There are many options to minimize or prevent them. chemocare.com/chemotherapy/drug-info/decitabine.aspx I am almost sure that the mechanism that cause Huntington's disease, is the formation of a STOP codon amidst the CAG=CAG triplets repeats, due to inadvertent methylation* of a cytosine, that upon spontaneous deamination, would be converted in thymine, creating therefore a STOP codon, responsible for arresting the protein synthesis prematurely; that would explain the abnormal deposits of truncated proteins. Decitabine is probably not yet a cure but it may slow down Huntington's disease ( maybe even Progeria ) until a specific CRISPR-CAS protocol is developed to remove the excessive number of CAG triplets from the patients genome. If only the same amount of money spent with weapons was used to find cures, we'd be living on a much better world! * methylation means to add the chemical group CH3, usually to proteins called histones, where DNA is wrapped around, but sometimes inadvertent methylation of nitrogenous bases in DNA itself, in this case cytosine, can transform them into another base, thymine and that would produce a codon that arrests protein synthesis. Evidence with other codon being transformed into a STOP codon: www.ncbi.nlm.nih.gov/pubmed/28523359

[@tinamariefarmer4419]

hey hun..i understand. and you are having to deal with being a survivor as well as being a caregiver. my soul gives you hugs my friend. if you ever need to talk i will give u my email then email u my number. anyone else who needs to talk too

[@wezilla21]

I pray for you and your brother's strength and hope y'all are doing ok. Everybody has a purpose, no matter how small or big

[@tabethascott4476]

I'm going through the same thing right now with my brother. I don't have it but he does if you see this and have any advice please share

[@kathleendowner6506]

So happy for you ❤️

[@MayelaThompson]

Thank you for sharing your story. I don't know what to say that could make things better. I just want you to know that you're not alone. Hugs to you and your family

[@tinamariefarmer4419]

u know.. your offer for a sympathetic heart means everything

[@marilynbarker8255]

An amazing young man. Very brave to share your story. Wishing you comfort and peace.

[@time4sleeping]

A lovely guy I met in 2011, glad he's happy & his life is now being fulfilled.

[@Lou-xq9br]

We tested together around the same time ❤️ takes courage

[@murphypaschal]

What a great guy. He probably has no idea of the huge positive influence he is having on people.

[@mariekatherine5238]

I’m surprised 90% don’t get tested. I’d be afraid of passing it on to my child and therefore, not have children.

[@LoversGrief]

Not everyone wants to have children.

[@anusreetravel]

all are scared... anxiety and stress can cause to death before HD worsen

[@JonathanHernandez-mm3nd]

May god be with all those with Huntington’s Disease.

[@hannahhughes4801]

A brave strong man ❤

[@faithevans6689]

Im turning 19 on Friday, Tomorrow I have my first genetics consultation to get things going. My mom has it she got bad in 2010 I see what it did to her and god.... I'm scared to get the results. I cried so much during this just due to the fact we have so many similar issues and it was so surreal to think I may get that +. I wanted to know because i wanted to know what steps i need to due to expesually if i want to have kids, my career,...... My boyfriend which lord knows i plan to marry. My biggest thing i'm worried about is him having to take care of me like I had to my mom. I would do it all over again for her believe me. I know the strain and crying because you see them get worse and there is nothing you can do but really just be there and take care of them like a caretaker... I know i wont be prepared but i need to know i just scared.

[@adsromek]

Faith Evans I can’t imagine how hard this is. I’m praying for you.

[@un.inspired]

I hope everything went well for you. I am in a very similar situation

[@faithevans6689]

@@un.inspired it went well it was my neurology appointment, blessed I showed up as asymptomatic (I had no symptoms). I have my 2nd appointment on Wendsday (no idea what it’s about though)

[@un.inspired]

@@faithevans6689 that’s amazing I’m really happy for you. So are you going onto the next stage towards taking the test? Your only 19 right ?

[@faithevans6689]

@@un.inspired yes ma’am. It’s affected me and family since 2010(but I believed the first symptoms showed up when I was born) she didn’t get diagnosed till 2017 and now she is at her final stage of the last stage. I won’t tell her she doesn’t even know I’m getting tested it’s for the best. I wanted to do it because of curiosity, I want/have a sense of need to do it, also I want to be able to have children naturally without the worry of them having it and/or (knock on wood) if I need to go down the route of egg genetic test and IVF. It’s scary it really is but I have to force myself to have the mentality that “if god forbid I am positive it’s something I’ve always had I just know more information now” and “if negative I know for my future children sake”. I’m blessed to be able to get testing and happy to be able to get answers but it’s also very truthfully scary you have so many thoughts (expesually me with depression, anxiety and I havnt been diagnosed yet but I’m sure ADHD) it’s ruff. But I have family and help at my palm if needed❤️

[@me-xx2gl]

My fiance lost his first wife to it. They had 4 kids. Her mother had been diagnosed with dementia, so they did not know. My friend's oldest had it. #3 child died in an accident. The wife's family was large with 7 kids. 6 had huntingtons. My fiance died from type 1 diabtes. I had a talk with his late teen daughtrr. She said she wiukd be tested. Turns out she did not and had 2 children. She now has or had huntingtons. I only know what i can find on facebook. Assuming she is in care or dead. She has ruined the lives of her chikdren and husband and maybe passed it on. It ruined her father's life and all of his children. It could be erradicated if all were as responsible as this young man

[@janececelia7448]

It would be hard decision to have the test, but it would also be hard deciding whether or not to have children. This young man found it difficult growing up with a father who had HD. I had a similar choice to make for a chronic disease that had I become pregnant I would likely have died during my pregnancy, soon after or become critically before my time. My disease isn't genetic, yet I didn't want to risk my life or put stress on a child whose job is not to look after me but to thrive. I chose to get sterilized.

[@ianstoker1]

I'll bet he packs more into just one of his weeks than most people manage to do in a whole lifetime

[@toddgilmore118]

I got tested for HD and was positive CAG 41 that was 8 years ago, I'm 50 now and have some noticeable signs of twitches. Mostly I didn't care if I had it or not, I didn't do anything with my life before, and nothing's changed!! what's it matter at this point. My Dad, brother, and my niece all have it, or had it. I lost my Dad to suicide, my Niece at 23 in a nursing home type of place. I'm on SSA for having ADD/ADHD for past 25 years.

[@SimplySammyK]

Any updates on Matt? hows he doing?

[@lrn_news9171]

When are his symptoms going to start if he's positive? How much time does he have being functional?

[@gbrown932]

Are you still here ?

[@76DEEZNUTZ]

U should get disability or something. 10 yrs they refused me Huntington's is real. I owe 50 grand in child support. In and out of jail.

[@naomibeery478]

Life is super short anyways but eternity is forever...find jesus and find eternity in peace

[@im_elizardbeth]

Omg shut up

[@Rtgyr]

Shut up

[@savageqween6324]

huntington is my last name

[@AlexandrBalanMD]

kzbin.info/www/bejne/l2qrfap5i9iYjNk&ab_channel=AlexandrBalanM.D Anesthesia in patients with Huntington's disease Alexandr Balan M.D

[@janemike3490]

I recommend Dr Oje Abacha on his KZbin channel for getting rid of my Huntington disease.

[@monpayscanada]

You did not have Huntington’s. It is incurable. You have Wing nut disease!

[@gunterliam7411]

All thanks to dr Stanley who cured me from my Huntington’s disease I am forever grateful ..

[@josephmitchell740]

If this is true - I think you’re the first person to ever be cured of Huntington’s Disease.

[@baibhavvishal5746]

If it is true ...dn kindly share details of doctor how and where to consult.so that other can also get benefit

[@LoversGrief]

You shouldn't have tested. Period.

[@Cozycountry1]

You have no right to say if any of us at risk should be tested or not. I am going to get tested, my mother died of it, and I had 1 appointment years ago. I wasn't ready then and was caring for my mother, but now I want to know. Better to know than live in limbo. People go for all sorts of tests and check ups like mammograms or prostate tests and they may have cancer that can't be cured, but still have regular testing. This man didn't want to live wondering if he had it or not and can now be aware.