The mission of the Hereditary Disease Foundation is to fund transformative research to find treatments, and ultimately a cure, for Huntington’s disease and other related disorders.
You're mother or father has to have it for you to have it. My cousin tested for it at a early age. Her test was positive and she quit living on that day.
My grandmother had Huntington's disease. None of her children had it but almost all of her cousins did. My family didn't have to worry about having it but we saw relatives suffer.
OMG. I recall seeing this 60 minutes piece and haunted me. I recently starting searching HD and reinforced my belief that I would kill myself. The families suffer so.
The day before, NBC aired of course, that iconic Bill Buckner error during Game 6 of the World Series that tied the series at 3 between the Mets and Red Sox
I just found out 6 months ago i have Huntingtons you are an inspiration to others with Huntington's i changed my diet to the mind diet and i excersise every day thank you i hope you are doing well still
My thing is if you want children you should take it if not whatever you want. I just think it’s irresponsible if you bring a life I. The world that could have that kind of risk
Irony. The blonde sister who helped develop the test for HD wound up having it, and the other sister who claimed she didn't want to know wound up not having it.
I’ve taken care of many patients with this disease. I wldnt wish this on my worst enemy. Which begs the question, why have kids knowing it’s hereditary? One patient of mine told her college age daughters she had a brain tumor instead! Maybe the guilt was too much for her & her husband to bear.
Sometimes people carry an illness and have no idea. They didn't do genetic testing when my grandmother was sick . We have Hemochroatosis from my Dad and Mom's families. I wasn't diagnosed until late 40s My parents feel just awful for passing it on to us. I have been most effected. We should be able to choose in the end. I have a lot of responsibility having a transplant and will be having another. Be thankful for every day. And enjoy life
Bless you, Denise… I hope that we funnel so many resources into this and many neurodegenerative diseases, and tackle them with the vigor we tackle COVID with.
Respected researchers and experts of HD research, I am doing my research in HD. I need DNA Sequence which is affected by HD. Can I get DNa sequence from HDF Without any meta data. Kindly reply me. Thanks in advance
Today we would recognize the mother's suicide attempt as a request for medical aid in dying. Everyone with a terminal disease should have the right to medical aid in dying.
When I was 28 I was diagnosed with an incurable eye disease and told that I would most likely go completely blind. It changed how I have lived my life. Not only reading and memorizing every good book I could get my hands on. But also really looking and memorizing my children's faces, the beauty of nature and an appreciation for something I had taken for granted, being able to see. So far the doctor has been wrong. I can still see. Not one of us is promised tomorrow.
I believe I would rather know and prepare for the rest of my life . I don't like surprises . My family on both sides run high blood pressure,heart problems and strokes . I have a heart arrhythmia and so far I haven't needed medication for it . I know it is coming . I am a 65 year old post menopause woman . Guess we just have to trust in GOD . My heart goes out to those who are dealing with this now or in the future .
Cancer runs in my father's family. My father had AML, one sister had liver cancer, one had pancreatic cancer, one brother had stomach cancer, one brother had prostate cancer. Two first cousins had cancer of the esophagus. Two nephews (twins) had brain cancer, one had prostate cancer, and one had liver cancer. I'm a 17 year survivor or Stage 3B Non Small Lung Cancer.
What beautiful, brave, courageous women they are. You know that that is most likely the first thing the think of in the morning when they wake up and the last thing before they fall asleep. May Godspeed his love and healing to you and your family. God bless.
They are not brave at all, for refusing to take the test. That is a senseless decision, driven by fear. If they took the test, and it was positive, they could help their loved ones plan for their care. It's selfish and cowardly of them not to take the test. I'll bet they did take it, at some point.
I’ll never understand why some people don’t want to know. I would absolutely want to know…… I believe there’s power in knowing. Think about it…… if you were going to die next week…… & you didn’t know… you’d spend the last week of your existence going to work, maybe being angry at a friend or family member…… stressing about finances & not eating the dessert because your on a diet………. However if you Did know you were going to die next week….. you’d live differently….. quit work, Surround yourself with your most cherished loved ones….. doing whatever you want to do….. no worries about money or calories. 😉
Eleanor, my family carried the Huntingtons gene for many generations. Ive lived with fibromyalgia since age 9. My best friend growing up has it too. I also was in a horrible car wreck in my 20s, causing spinal problems for forty years now. I alsowas diagnosed with oesteoarthritis 15 years ago. So i can totally relate to everything you say. God bless you.
My great grandfather, my grandmother, my mother and my brother died from this disease. When i was in my thirties i worried every day that I would get it and pass it down to my son. Finally in my forties I found the courage to take the test. Thank God I did not test positive. Then a few years later, my father was diagnosed with Parkinsons disease . More research needs to be done into these neurological diseases. People that get these diseases can live many years with these diseases, unlike some cancers, where people suffer in shorter amounts of time. My mother was the sweetest mother anyone could hope to have. With Huntington s she became someone none of us new. My brother donated his body to medical science. I pray a cure comes in the near future.
@@anglophils645 Thank you Angelo Phil's for your very kind remarks. It is appreciated. I just wish the best for all victims of Huntingtons and their loves ones.
Why did you procreate if you knew you could pass on such a horrible faith and such misery … why not adopt or using a surrogate? How ignorant and selfish
@@dianawalker1622 I am in a similar situation with my husband- we got a vasectomy and a dog instead of potential very sick children - yeah but call me the ignorant and selfish one 😂
I am donating my body too. I have a genetic disorder that causes my organs to fail Rheumatoid arthritis liver and kidney disease Osteoarthritis. I have had 1major transplant. My kidney will be next. I was misdiagnosed until I was 48. God Bless everyone suffering. I appreciate and enjoy every day.
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I did genetic health this year. Thought for sure there would be many cancer markers, and altzheimers. There were surprisingly none so i wonder if its correct! But there was 'Benjamin Button' or Werners carrier genes and luckily i was not a partner with any male who would have contributed what was needed to pass it to my children. But now they know to check for it also.
About what the scientist said at 11:45... The only way in which one could use the knowledge provided by a positive HD test result to solve problems would be to go to the doctor and be cured. The problem is, well, there is no cure. So I think that if the scientists first came up with a cure _then_ it would make sense to go and get tested. Right now (and back then) one can't do anything with that knowledge... except for wait for the symptoms to start showing.
My best friend & I were so close we did everything together including us marrying 2 best friends. We had fun were ambitious, thought our whole world ahead would be fantastic. Then she moved to the north of aust & I lived in the south. I tried to contact several times but she wouldn’t answer my calls or contact me. When I turned 50 I was diagnosed with rheumatoid & fibromaglia & life completely changed for me. Then many years later my husband got in contact with her husband & I found out the truth that she had Huntington’s disease & she didn’t want me to see her like that. I then found out that her mother had died from it & her brother had it. He r son is a doctor today & free from it. God I miss her. 🙏🏼❤️
ELANOR JADA My best wishes to you and hope my story makes you realize you are not alone.. your friend didn't want you to have to see what she waas going through, and iam glad you respected hercwishes.
The best part now of web connection is that anyone can reveal secrets otherwise we could never find out, such as, how come in Far East countries such diseases do not exist? It's about a western kind of lifestyle or what? Now we know how dangerous is when mothers during pregnancy they use drugs or dope that murder the baby, the very first impact is on the fetus neurologycal system, other cultures and traditions are not addicted to pain killers like western populations. We have to learn from such terrible situations, it's not nice to ask the ...sweet death, for those hopeless patients living like vegetals, they have no idea what life might ever mean if not as a terrible torture and they have no guilt about it, let them be released by a terrible torture of a kind. But humankind mercy is pushing us, support health care research in order to find a cure, a solution, it's a huge challenge indeed, such suffering people become laboratory hamsters for scientific experiments
It's an inherited disease. It has nothing to do with taking drugs during pregnancy. You mentioned people taking pain killers and getting addicted. I hope you never have to take them , however many people do if they want to keep living. For the alternative would be to commit suicide when you are stuck in a body when you have daily excruciating pain.
She is a remarkable woman! I do think this video shows her clearly exhibiting the early stages of HD. She was certainly in denial. She has since been formally diagnosed with this cruel disease.
