What is Huntington's disease?
Вставка
- Опубліковано 5 тра 2019
- Huntington’s disease is a genetic, neurodegenerative disease with a devastating impact on individuals and entire families. Despite knowing the exact cause of Huntington’s disease since 1993, there still remains much unknown about this complex brain disease.
In this animation, Lauren Byrne, a Research Fellow at the UCL Huntington's Disease Centre shares her personal experience with Huntington's. She takes us inside the brain to explore the mechanism of this disease leading to the cognitive, behavioural and motor symptoms in Huntington's.
This is a Roche video developed in collaboration with Ed Wild, also from UCL Huntington's Disease Centre, George Yohrling from the Huntington's Disease Society of America, and Roger and Brenda Wylie, a family living with Huntington's disease.
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My father has it and I was tested not too long ago and the results terrified me. I'm 36 years old and not looking forward to this taking over my mind and body as I get older.
Sorry to hear that 😢 I work at a place where people live with huntingtons. We do the Best to take Care of Them.
I know a research group that could possibly be your solution
So sorry to hear about your father and your result. I hope you are taking care of yourself and finding a community for support ❤
I feel you
It's runs on My mom side of the family.
My uncle died of it years ago very early. But all 3 of my aunts died in the last year. Now my mom is in the hospital with a week left. They removed her feeding tubes. She is not able to move anything but her eyes. She is in a weird comma were she appears to be a sleep. She is snoring and everything but her eyes still open. Her body won't let her wake up fully. 😢 The whole family went to say there good Byes. She actually had tears running down her face.
Now 1 my brother has it and 1 of my cousins so far. The rest haven't been tested. It's been a dark cloud hanging over my family😂
Prayers to you.
My husband has HD. He was in the clinical trial which recently ended abruptly. It is heartbreaking to watch him decline. Thank you for this video and your studies.
Pure herbs from Africa is the possible cure
I'm sorry about your husband. My wife's mother had HD and it was gut wrenching to watch the decline. I met her but never knew her because she was already so detached from reality.
So sorry to hear about your husband. From personal experience, it is extremely hard on spouses. Sending love and care
I take Care of people with Huntingtons, and i love my job. Knowing we do the Best to take Care of Them and make Them feel good and cared for. ❤️
I just wanted to say thank you, I started looking into this after Huntington’s took my twin sisters life at the age 21 and a half....you’re video helped me better understand the disease that took my sisters life.....honestly to this day I have never been to the doctors to see if I had it myself mainly for being to scared to know if I have it....but trying to build up the courage to hopefully go in for the test
go man, you are not alone
Have you gone for the test yet? Trust me from someone who knows, knowing is better than not. It’s hard to find out, but once that moment is over you can enjoy your life no matter how much time you have left.
Saying that it was your twin is self explanatory
@@abdouaboud7490 it's his non identical twin though
My father got diagnosed with HD two days ago at age 55. Sadly he got diagnosed pretty late. He's already in a stage where he is barely able to get out his bed. I am 26 years old, in the prime of my life and all of a sudden I am scared. I'm unable to sleep because of this and I don't know if I want to do that test.
My grandmother had it and died because of the disease.My aunt also unfortunately has this horrible disease.It skipped my mother who is older than my aunt and my uncle,who is younger then my aunt.I hope that one day they can cure this horrible disease.Prayers goes out to all that has this and their familys. 🙏🙏❤❤
Meanwhile UA-cam:
disease.My and disease.It is a website url
My brother has Huntington's Disease - this video is a big help in understanding this disease - thank you for your efforts in the research of this disease and good luck with your work.
Hi Vincent
Thank you for your kinds words. That's so good to hear. We appreciate you taking the time to share it with us!
Have a nice day ahead!
Ana on behalf of the Roche Social Media team
I just turned 50, and was diagnosed with it today.
Can I ask what your symptoms were?
😢
I'm sorry :( I hope you live a fulfilling life.
keep strong 👊
I'm sorry to hear that friend. It's a dark cloud hanging over my family.
I feel you
It's runs on My mom side of the family.
My uncle died of it years ago very early. But all 3 of my aunts died in the last year. Now my mom is in the hospital with a week left. They removed her feeding tubes. She is not able to move anything but her eyes. She is in a weird comma were she appears to be a sleep. She is snoring and everything but her eyes still open. Her body won't let her wake up fully. 😢 The whole family went to say there good Byes. She actually had tears running down her face.
Now 1 my brother has it and 1 of my cousins so far. The rest haven't been tested. ❤❤😢
It is such a terrible disease, my dad had it and my brother was diagnosed today.. i don’t wish it to anyone… I can’t believe that we can’t slow it down at least yet.. I am heartbroken..
I feel you
It's runs on My mom side of the family.
My uncle died of it years ago very early. But all 3 of my aunts died in the last year. Now my mom is in the hospital with a week left. They removed her feeding tubes. She is not able to move anything but her eyes. She is in a weird comma were she appears to be a sleep. She is snoring and everything but her eyes still open. Her body won't let her wake up fully. 😢 The whole family went to say there good Byes. She actually had tears running down her face.
Now 1 my brother has it and 1 of my cousins so far. The rest haven't been tested. It's been a dark cloud hanging over my family😂
thank you, this video provided every information one generally needs to know about this disease.
Great video. Thank you for making and sharing. I will be showing this to my biology students.
Great work! Keep at it. It is research like yours that will finally get to the cure!
Congrats ! You are very good person and. Very noble cause
Thanks for helping me on the project on this disease
Very informative! Thank you for this, and all the work that you do!
I feel very fortunate that my mother doesn't carry the gene for it. Watching my grandmother's siblings and my cousins suffer has been awful.
Side note, the side of my family who carries Huntington's disease emigrated to the U.S. from northern Ireland. I just thought that was interesting.
Yea, that is interesting! I think there is a lot of cases in N. Ireland compared to the size of the population but it isn't well studied or resourced there.
Thank you for sharing your story
thank you for this video! Great work hopefully you can find the cure to Huntington!
Just lost my father-in-law at age 48 to this disease. Due to the lack of study we were not able to get him help in time and I am scared my husband has the gene.
Im so so sorry to hear this and I am praying for your family
Thank you for this great information!
We have HD in my family and I am going to get myself testet in the comming weeks. This video gives a great explenation of the disease and how Forms.
Are you ok?
Hey, are you ok?
Thanks for making this beautiful video with an excellent explanation, I am going to start my research end of this year in this field of area (HD).
Wonderful!
Just lost a dear friend to this. Hope it gets sorted in the future.
Beautiful, thank you
God bless you all, sending love that’s all.
Any way to get attenuated viral particles to correct the abnormal protein code ?
My father was just diagnosed at 61 years old and I’m very scared for him and my family
Text me could help you.
@jessywalterstanyipiaesengw2580 lol unless you have a cure in a bottle you won't help anything.
wonderful
Thank you for sharing this video #SharedLearning #Health
God bless u all I'm starting to be symptomatic its sad wish u all the best ❤
A cruel cruel disease 😭
My grandma and mom died and I have it along with my daughter
@@kirkhiggs6321 😭😭
@@kirkhiggs6321 i hope you live a long life
Sitting here crying I’m so grateful for every moment I get to experience 😭😭😭
Heat-shock Proteins may be a key focus in the understatement of htt. HSP70 is a chaperon and sometimes will not recognize the htt protein meaning if we can use CRISPR to modify this gene we can and will understand this gene and find medical intervention
Different research groups around the world are investigating Heat-shock proteins and CRISPR 👍
i have epilepsy grand mal seizures too
My dad has it and so does my husband.
Mr.Freeze wife has this I wonder if we can cryogenically freeze people with this disease while we find a cure.
how about the CRISPR? can't it slow down the mutation of HD?
Hi hsshahh baanabehaja, thank you for getting in touch with us. To ensure that the right team takes care of your request, we would invite you to get in touch with our office in your country. You can find a list of all Roche offices at this link: www.roche.com/about/business/roche_worldwide.htm
Wishing you all the very best. Your Roche UA-cam team
That disease took my cousin last night. Now I want to understand it.
I’m very sorry for you’re loss. ❤ I’m here today because I’m learning about it at med school. I hope they come up with a cure one day so that no one has to go through this. Once again, I am very sorry sir.
Stay safe
Who else is watching this for school
You can seizures and spells that can be a hard time to get rid off although it can be cured with intense bots of the resumes of physical therapy but it’s if you are near. A good hospital for the future and for the future of disease you can get better over time
I do not know anybody with this disease actually..just seeing it multiple times in medical documentaries.
I have other neurological issues though..
I now know someone, and it is so incredibly sad. Just last week saw how much she has changed in 4 years.
It's runs on My mom side of the family.
My uncle died of it years ago very early. But all 3 of my aunts died in the last year. Now my mom is in the hospital with a week left. They removed her feeding tubes. She is not able to move anything but her eyes. She is in a weird comma were she appears to be a sleep. She is snoring and everything but her eyes still open. Her body won't let her wake up fully. 😢 The whole family went to say there good Byes. She actually had tears running down her face.
Now 1 my brother has it and 1 of my cousins so far. The rest haven't been tested. It's been a dark cloud hanging over my family😂
My brother seems to be getting aggressive. Constantly agreeing with everyone. It's not like him. My Mom isn't even dead yet and now I'm going to watch my brother decline. ❤
10/17/76. My birthday. My grandpa had mmm
One of my aunts on my father's side of the family has HD.
And when I found out that it is genetic in my father's side of the family.
I got tested for the gene and it came back negative.
But I am always keeping myself up to date with what is new in treatments for HD.
But for my aunt, the effects of the HD have started to take effect on her.
We are really sorry to hear about your aunt's story! Wishing you and your family all the best!
hello .
I am about to graduate from medical school how can i be part of these disease researchs or pursue in advance studies like you a videoabout such guide will be highly appreciated thank you
Dear Hashim
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May god bless you my sister please don't give up keep on going so many innocent folks out there waiting for some kind of miracle medicine that can HEAL them.. but without angels like YOU working to find a CURE this will never happen.. thank you for everything your doing ❤️ thank you
My Mom died from it. Terrified I have it or passed it to my children.
I'm not clear. Do the number of CAG repeats increase or change over a lifetime? While not gender related is it region related? Is it more common in say Wales or France or Ireland for example?
This was an excellent video with great graphics!
Recent research is showing that certain parts of the body has unstable CAG repeats where they tend to increase more parts of the brain most affected in HD. The CAG repeat people get from their genetic test tends to be from blood or salvia and these tend to be more stable and not change much over a lifetime. They can also be unstable when passing from one parent to the child. They tend to be more unstable when it comes from the father which is the only big gender difference in HD. There are regions of the world with higher prevalence. It is more common in Caucasian populations. There are also clusters of extremely higher prevalence in parts of Latin America.
can someone help me ... I'm in lot of stress due to this disorder
Hi Nivedita
Thank you for reaching out. We recommend you to consult our website for clinical trials: forpatients.roche.com
Wishing you all the very best.
My sister have a huntingtone disease please suggest which one madecine use this desies plese help me
Dear Sapnil, For information and advice about Huntington's disease we recommend speaking with your medical professional. We wish you all the best, Your Roche UA-cam team
Unfortunately there is no medicine to cure this awful disease. Doctors can treat the symptoms with medication though.
Im 15 and im seeing my mom fighting with this so hard
I sorry
It's runs on My mom side of the family.
My uncle died of it years ago very early. But all 3 of my aunts died in the last year. Now my mom is in the hospital with a week left. They removed her feeding tubes. She is not able to move anything but her eyes. She is in a weird comma were she appears to be a sleep. She is snoring and everything but her eyes still open. Her body won't let her wake up fully. 😢 The whole family went to say there goodByes. She actually had tears running down her face. 😢
Now 1 my brother has it and 1 of my cousins so far. The rest haven't been tested. It's been a dark cloud hanging over my family😂
If the mechanism that causes Huntington's disease is the formation of stop codons after cytosines are transformed in thymines due to inadvertent methylation of said cytosines, then maybe existing drugs inhibitors of cytosine methyltransferase, could slow down the damage in neurons. The presence of truncated proteins in neurons could point to the formation of stop codons TAG replacing CAG.
There is an aberrant splice site in the non coding region between exon 1 and 2 that is linked with more extreme CAG repeat lengths. This results in the truncated htt exon 1 fragment which is very pathogenic. To my knowledge, there is no evidence for stop codons forming within the CAG repeat tract itself.
Pls we are requesting to #Roche
Make easy and affordable for middle class family, because they can't purchase #Risdiplam for kids because of Huge price
Thanks in Advance
it is really dramatic that there is no treatment for this disease...
I do pray a cure and/or medicine to help manage it.
Why are the neuron's chromosomes duplicated???
Huntington, Virginia , 2021 "Nice and creative Videos，I can see A lot of thought has been put into the content and editing of the video， This is really my favorite channel.:) .🌴🌴🌴excellent 👍👌👍👌👍 🌴🌴🌴 🌴🌴🌴 🌴🌴🌴 🌴🌴🌴.
Hello, can you tell me the latest update on the research progress for this disease and if any treatment has been discovered? Can this disease be halted at an earlier stage if proper treatment and medication are administered?.... please mam respond 😭😭🥲🥺
How does this differ from Alzheimers? Do Huntingtons's disease cause memory loss?
Hi Kohmelo,
Great question.
Alzheimer's is the most common type of dementia, affecting ~50 million people worldwide. It is a progressive brain disease characterised by a decline in memory, language and other thinking skills, as well as changes in mood and behaviour.
Huntington's disease is a rare, genetic, neurodegenerative disease, which severely affects a person’s everyday functions, such as moving and thinking. Huntington's is caused by a change (mutation) in a single huntingtin gene (HTT), which triggers the formation of toxic (mutant) huntingtin protein (mHTT).
If you'd like further information, we'd encourage you to reach out to your local patient advocacy organisation, which for Huntington's can be found here: huntington-disease.org/findyournationalorganization/ and for Alzheimer's here: www.alz.co.uk/associations
What about the relationship of Huntington's disease and neurotoxins like aluminum, acetaminophen, flouride, mercury, lead...etc... or even the correlation between the gut microbiome and the countless toxins found in processed foods like GMOs, pesticides, food additives, colorings, synthetic vitamins, antibiotics, neurotoxic psychiatric medications being taken while pregnant, the neurotoxins found in vaccines.... or the relationship with vitamin deficiencies like fat soluble vitamins A, D, and K2? Or the Omega-3 deficiencies in the diet?
What if changing the "chemical, emotional and environmental stressors" played a major role in the gene expression?
What about cholesterol deficient dietary pregnant women along with a lack of fat soluble vitamins while pregnant? Our brains need cholesterol and healthy fats like Omega 3 to properly form and mature?
Have you studied any of these as possible solutions?
Dear Brian, thank you for your interest in our studies related to Huntington's disease. We kindly advise you to contact medinfo.roche.com/ if you wish to receive more information. We wish you all the best, Your Roche UA-cam team
EXACTLY!!! They need to be looking for the root cause, not how to make millions off pharmaceuticals for it.
yes indeed, i have no doubt that all those things cause HD. it is like for example: Alzheimer is caused by gluten...(and this is a fact...)
That is true. Need to look at the environment. So many toxins in our everyday lives that can be detrimental to our health.
Agree, especially since this condition came about a little after the industrial revolution, same thing with heart disease appearing after vegetable/corn/cottonseed oils were replacing animal fats in cooking.
You're tell me one of my members who volunteers everyday and is the sweetest woman is going to die young ??!! She told me Friday she has this disease
Ik how it started
Add copper sulfate, DMSO will help. I believe in certain races need more of certain minerals and vitamins because of genetic dispositions. But is a real disposition or lack of certain diet or exposure to chemicals in the work or home environment?
doubtful
I have it
real
Is Huntington communicable through blood sharing ?
No
😢😢😢
#Drisibor Alternative Herbs
Despite resercagers knowing the exact causes of thr hd since 1993, therestill reamins so much unknown abt this extremely complex diseass
Ultimately fatal
We can give one try to CRISPER OR cas 9
13
If we want to end this horrible disease, we need to stop using animals to find the cure.
We are wasting valuable time and resources replicating the disease in animals that don’t get HD.
Please focus efforts on human relevant research!
I thought it affected males more?
#driyaremoses.
#driyaremoses channel
Kinda scared that I have this
Sorry to hear that. Can i ask how old you are and what your symptoms are? I take Care of people with Huntingtons as my job.
You gone have Huntington in the world and yet people still belive there is a God.