Відео

God will not protect your family. And refusing to be tested and potentially inflicting this disease on your children is wicked. My son has Huntington's. He inherited it from his father, who did not tell me it was in the family until we were married and then told me God wouldn't let Huntington's happen to good Christians. Turns out two of my husband's brothers also have it and also did not tell their wives and they also had children. My son is my only child and I will lose him to this disease and I am also losing my own independent life as I am his fulltime caregiver. My son and I left my husband 20 years ago when my husband's Huntington's symptoms started with mood disorders and mental fog. He had become impossible. I tried and tried to get him to get tested and deal with his mood and mental disorder at that time but he said any problems we were having were because I wasn't enough of a submissive, trusting and Christian wife. It was all me, not him. So, my son and I left. My now ex-husband immediately disowned his son for daring to "disobey his father." The "good Christians" in both sides of the family considered me wicked for divorcing "with no reason." My son and I are on our own. It's great to hear stories of people who are early in their diagnosis and maintaining a normal life and a good attitude -- but that doesn't last. And that's the truth.

I find it disgusting the way you word that you can only do 'the best for the most' meaning sounding like you are trying to get the best bang for your buck. The way you tiptoe around the wording that you people DO NOT HELP EVERY PERSON IN UNIQUE SITUATIONS WITH HD is incredibly disturbing considering that everyone looks towards you guys to be able to help people and meet them where they are needing help. And people are in so many different situations as a result of HD affecting their lives and you people getting all the money that is supposed to help people like us is terrible. The HDSA is terrible. I hope new leadership will care about all of those suffering from HD, and not just leave them out to suffer or sit around and cash all the HD checks coming in. You people need to do better.

Adorableeeeeeeeeeee

Is it just me or you guys noticed majority of HD patients are whites? Never seen (so far) any UA-cam videos about black people with HD.

God bless you

i totally wasn’t looking at brianne the whole time

He's retarded

Hi, where I can found, HD day care to my mom? We live in Palm springs, tanks!!!

Ty kronk. I will go do this. I will not enjoy the fight, but i will partake.

I am in such isolation. I have symptoms. I do not receive any support from US systems (where i live) or have traditional support networks. I cried for some time after watching this. Thanks for being real and informative.

Oh so nothing advocating for patient care and no information how you guys lessen financial burdens for individuals suffering from HD. Terrible as always.

Your presumption through this presentation that these individuals have these support systems and families to assist them is disappointing. Your listed surrogate priority can all be people you no longer associate with or want in your life. You're often talking about through the lens of a spouse. There's nothing talking about the cruel reality faced by individuals who have to lean on the system for support that's insufficient, or from people that don't really care about you. Also idk about POLST but people's advanced directives can be ignored and their POA make decisions against your will, which can include forcing medications or other treatments on you against your will, ones that will not be helping your situation just making you more manageable for the people around you. Also emergency services are not going to be helping HD patients, they're barely equipped for regular emergencies. And all of this varies geographically. I thought it kind of disturbing you are telling caregivers to compartmentalize their reactions to seeing others force their wills upon a HD patient in some kind of 'emotional container'. You're saying you're doing it for care or love to cope but it's to control the individual and their incurable dying brain society doesn't care to help adequately. Or saying 'oh do it for the kids' almost sounds like the terrible reasoning someone would use to stay in the incriedibly abusive dynamic created by an HD patient, a caregiver, and the inadequate support from society. About creating choice where you can, I think you are continuing to cope for yourself offering them irrelevant choices to the ones provided to them by the system as if you are trying to give them some kind of control as you literally participate in taking it all away from them. HD people need more care then their states may provide and definitely that all of society provides. Life is hell.

I just was diagnosed with HD and lupus

Where are you located

El salam alekom Peace be upon you and God's mercy and blessings Hello everyone I have a friend who suffers from this disease And I would like to attend this meeting with you Perhaps I will benefit from information that may help him in alleviating the symptoms of this disease Knowing that he suffers from a lack of medications and activities I wish everyone a speedy recovery

Cheers and love you All ❤

Hoping you are all doing well in 2024.

The systems are your pilot.

My friend and his sister has hd they got it from there dad

Thank you 😊

Great lecture

Very informative

How can anybody hate people who created these people? They are still Gods children and just because they suffer does not mean they do not bring immense meaning and joy into the lives of those privileged enough to know them. My husbands family is full of this disease and they have brought many people to Jesus through their childlike faith and love.

I have it and forgot it was in May. Missed it🤣much love Drew❤️🙏

Poor little sweetheart. When they said that she, at the age of 11 or 12 doesn't have any friends, I realized how lonely she must be. I always thought every little girl had a best friend.

This is Steve Gottlieb, friend of Jaime

I so admire them for doing the testing. When my grandmother was diagnosed with this it was too late not to have children. Thank God my mom didn't have it.

I don't know how I got so lucky. My grandmother had this terrible disease. My mom was her oldest child. None of her children had Huntingtons . Since my mother didn't have it I would never have it. My grandmother's brother and sisters weren't so lucky. Most of the children born to them had it. I had a 2nd cousin who got the test at a young age and discovered she was positive for the gene. She shut down and stopped living after that. I wish she would have never gotten the test!

Good job, captured a great spirit of hope and determination, love it

🙏🏽🙏🏽🙏🏽 your a great actor luv

0:00 I made the flying thing

I have only so much sympathy for those living in denial when so much is at stake for this atrocious disease.

Thnk you for sharing this information!

Huntingtons is a combination of the worse cases of ALS and Parkinson’s along with mental illness.

I promise you this - I will press on for prioritized consideration that leads to a Huntingtons disease cure. This cure disease needs to be taken down. Thank you for sharing how beautiful and important your mother was. IN HER MEMORY AND HER SISTERS NAME TOO - we need to find a cure TODAY.

It's Scott Porter from Friday night lights!

I just started using this piece in the gym, I like how it makes me sweat so I knew it was doing something, but I Googled searched hand bike not knowing the proper name. I rotate doing 4 separate exercises on it.

Minecraft Story Mode?

My son-in-law has it he is 54 it’s absolutely heartbreaking

Makenzie you are beautiful

I’m praying for it girl 🙏🏽💖 For you.

Should be free to those below certain income levels! Like many other aspects of US medicine, the poor just make do without.

this wasnt funny

I knew a woman whose daughter inherited it from her dad she was finally diagnosed at 12 she was 21 when she passed. This is dear to my heart because her onset was about 6 years old when the symptoms started.

Im of a HD Family and in risk too. Thank tou. Gracias. Your words healed me

So amazing willing to fight for others but won’t help get the medical information of your pawpaw for his child that he tossed aside.

The flash

Hi, What is the latest update on this drug , or any other method ??

Katie/Abby auditioned for Max? That’s kind of funny. Max is my favourite character and Abby is my second favourite character. Also, I can’t picture anyone else in the role of Max other than Sara. Sara IS Max.

I can’t stop looking at Sara Waisglass!! She’s so gorgeous!!