- Видео 9
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Jasmine Ann Demers
Добавлен 9 май 2013
42 Repeats: A family's multigenerational battle with Huntington's disease
Huntington's disease is an inherited, fatal genetic disorder that causes the progressive deterioration of nerve cells in the brain. This is the story of how one family is dealing with the devastating effects of HD over three generations; A grandmother nearing the end of her life, a father in the mid stages of the disease and a daughter going through the genetic testing process.
Produced and directed by Jasmine Ann Demers
Produced and directed by Jasmine Ann Demers
Просмотров: 45 940
Видео
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I pray for a cure! Best wishes!
Very moving
Im seeing this in July of 2024 . Im so sorry you were found positive. What i found beautiful was your husband saying its not going to change anything if your positive . We are going to grow old together either way . My hope is you two sre living every day and that you became a journalist ❤❤Perhaps even have a baby by whatever way works best .
Hard to watch everyone has the "um" virus
So why did your father decide to have two children?
He wasn't diagnosed until after he had children. Testing for it is still relatively new and probably wasn't available or affordable until he was an adult. And before figuring out where it was and how it was passed the risk wasn't fully understood, that the chances were so high.
I'm trying to be kind, her life
Through IVF an egg donor is not needed. The mother’s own eggs are used, which, if she has the history of HD in her family, have a 50% chance of containing the defective gene. So, they fertilize all the eggs harvested from her with her partners sperm, and then test the embryos for the defective gene. All the positives are thrown out, and only embryos that are negative for HD are implanted into the mother. No donor egg used, no surrogate used. The parents have their biological child, free of HD.
This is called the "Devil's Disease " for a good reason. God be with all those who are affected. If anyone is interested, Chris Furbee has a story over 18 years in the making on HD. Called The Huntington's Dance
I'm sorry you and your family are dealing with this. My family is affected by autosomal dominantly inherited (familial) ALS. A lot of the same struggles and stigma.
The neurologist lady with the severely chapped lips was painful to watch & distracting. Thank you for shining light on the hope for genetic assistance. What a frightening diagnosis to have to face.
Thankyou for sharing. Your so brave.
I am so very sorry you’ve tested positive. Holding out hope there will be a treatment soon for HD.
Huntington's Disease can happen to anybody at any time. Audience wishes hapless victims all the best. Cheers!
My mother had 42 repeats and became symptomatic in her late 50s and died when she was 72. My brother also had the disease but became symptomatic in his 40s. He opted for doctor assisted suicide at the age of 54. None of the rest of us 3 other kids has HD but my brother has 2 kids whose status is unknown.
Now that we know we can prevent Huntington's disease by knowing that you carry the gene and not procreating.
Anyone who has it just shouldn't have kids. Not just to not pass it to the next generation but don't put your kids knowingly into a situation where they will see you ill and suffer and maybe even have to be your caretaker at a young age. Don't be selfish.
If you search online for her name, you will find an article from April 2023 in a publication called, "The Cut." Jasmine elaborates on her thoughts and plans regarding Huntington's Disease.
My niece 28 , just diagnosed. 51 repeat .. we are all heart broken
I don't think her husband understood about having children..unless he understood they would be using a donor egg and not hers..he kind of said well decide if we will do it natural or through IVF..SO IM hoping he knows it would have to someone else's egg and not hers.
But even then... this cold will grow up with a huge burden of an ill parent. Why would a parent do that to a child knowingly?
😢
Heartbreaking having to face that in a young life when you have already seen what it has done to other members of your family.Please pray that a cure or a good treatment is found soon 🙏🙏🙏
A good friend lost his wife, son & daughter. What upsets me is...as a young couple when his wife was diagnosed with HD and told by all the medical professionals not to have children, they both ignored all the advise & had three children, the first child doesn't have HD but the other son was dead by age 19, the daughter by age 27 both dead. People listen to the professionals do not pro created! Get tested if either of your parent's have HD!!!
Sorry for the positive results! You did a tremendous job on this film!
Ever thougt of praenatal testing?
To everyone saying that you shouldn't have kids if you have HD, I agree. But if it happens to you like it did in my family, we only found out we had HD on my grandfathers side when everybody was already born. Back in the day it was a very taboo subject... until one of my granddads brothers got diagnosed and everybody got scared. Of couse my great grandfather also had it, but we were never told
So true. It can be like a time bomb, and the testing might not have been so reliable years ago.❤
That's totally cruel and unfair people would tell others they shouldn't be here. I'm thankful you & your family are here. Conditions may become a gift someday, as evolution works it out. Those same people could have a child with another person, and their genes get compromised. Humanity is a work in progress, and mistakes sometimes lead us in the right direction.
So sorry.
Jasmine, you are brave and strong. You have hope. And there will be a treatment someday. God bless you and your family. Prayers said for all of you.
Im so sorry Jasmine. This is really rough. My dad has Parkinsons.
I lost my husband to HD in June last summer. I pray for a cure.
I’m So so sorry
My adopted daughter had symptom onset at 3, and was finally diagnosed, once she started having seizures, a few months after her fifth birthday. Her repeat count was 141. Disease progression has been rapid. She can no longer stand or walk, and has almost no comprehensible speech. Two months ago she turned six. She will probably not see seven. This disease is monstrous and it should be getting much more research support and funding than it is actually getting.
I’m so sorry.
@@524FrmGrl Thank you for the kind words, Amy. They help.
That is heartbreaking, I'm so sorry 😢
@@RIVKIBEN Thank you for your kind words. Our daughter passed away three days ago, just six years and five months old. We miss her terribly, but death was in fact a blessing given what HD had done to her. Someday there will be real treatments and maybe even a cure, and that day can't come too soon.
How sad for everyone
Can't help but wonder why any loving couple would risk passing on this life/death sentence to future generations. Until a cure is found there is only one way to stop it.
People with the gene can have children via IVF where only embryos that don't have the gene will be Implanted
Why keep having kids
One might not have but their offspring can? I mean can it skips generations?
It is directly passed. It does not skip generations.
Q
We all have our struggles , may god bless you all. Your not alone god just wants you to ask.
I’m so so sorry. You are so brave to video while you got the results. Sending you lots of love and hugs beautiful lady ❤️💞❤️
Let's all hope for a cure, or at least a treatment that meaningfully slows the progression of this horrendous disease.
I’m so sorry. It’s in my Fathers family but it has skipped me, for which I am very grateful. I have other things I’ve inherited from my moms side. But none as bad as that. Mrs. S.
It is not over kiddo. You can brake the cycle. In vitro children and a surrogate to have HD free family. Good that you got tested. Prayers and Blessings. Amen.
In vitro is enough, no surrogate needed. Just IVF implant of screened embryos.
If you know you carry the abnormal gene, why have kids?
This was a great documentary and I am moved by your situation. The good news is you can stop the gene from continuing by not having children the normal way. There are other options thankfully. And of course they are working hard to find a treatment. All the best to you and your future.
Then WHY are these people pros creating more people w/ this horrible disease ????? Want a kid ? ADOPT. But to push forward having children is just keeping this death sentence alive and well.......ADOPT, there are plenty out there that were given up.
My dad was diagnosed 5 years ago and this video really hits home. It’s a horrible disease. Just like the other neurodegenerative diseases, it starts taking your loved one away piece-wise. There’s no other way to describe it. It makes family members feel absolutely powerless which has compounding effects psychologically. I used to be the most upbeat, positive person but I feel like a shell of my former self. I just don’t know what to do.
even using an egg donor...if you have a baby at 30, become symptomatic around 40, the child could lose the parent around age 20, before they are independent....unless a treatment is found...
Yes, it is very selfish to have children (even adopted or with ivf egg donor.) Especially if you have over 40 repeats.
I'm so sorry that you tested positive. I hope the trials of pridopidine are helping people now and that (or another drug) will be able to prevent symptoms in young people who aren't symptomatic yet. With IVF, Huntington's could end within a few generations. Thanks to you and your family for sharing your stories and helping to educate the public on a disease most people have never heard of. <3
100%!
Omg, how heartbreaking. That was so sad to watch. I hope you’re living your best life and know we care about you ❤
I'm sorry, sweet girl. 😞 And like you said all the wonderful things you inherited from them. That's so relevant. We carry on both these wonderful loved ones beautiful genes & the genes that hurt us all so much. 2 brothers just 11 months apart in age I met by chance as a teen & hung out w/until we were in our prime adults. They lost their dad to suicide when they were toddler's. He just wasn't feeling right but nobody knew why & they didn't remember him all that well. At about age 29- 30 one of the 2 brothers started acting funny, getting up once at a restaurant just punching another customer, landing him in jail. It just wasnt him. When he came home from jail it was observed he was symptomatic w/ chorea. Nobody knew what was going on, he kept getting arrested & accused of being drunk in public or while. Finally he was diagnosed. He eventually died & his brother & I have since veered away from our old friendship group in our 40s now & maintained friendship getting together once in awhile but considering ourselves a bit of social phobes. Lol. 2 years ago I saw him & he was fine & we had so much fun. Since then we've been texting, usually several times per week, mostly venting about life & just being each other's friend. A family member of theirs s died in August so when everyone saw him at the funeral at (now at age 44 & hadnt seen anyone much in 2 years) he was obviously visibly symptomatic of HD & rigid. 2 years ago no symptoms that I could see. He went & got tested in Oct & has seemed weirdly happier since finding out, because he's felt like something has been wrong for awhile didn't think it could be Huntingtons since the brother developed symptoms, between 28 & 30. I think he's glad he knows what's wrong now but he'll text in the middle of the night really scared sometimes. Which makes me sad. Sometimes I'll bring bailey's & his favorite cheesecake & we'll do a movie. I'm really sad about the diagnoses, especially after we lost his brother/who was my other good friend to this & him & I have stayed in touch this whole time w/my friend all through his brothers death, through it all & the years following. 2 good hearted brothers, my friends- following the same fate, same cross to bear. I watched your video in full. My advice to your pre-existingknowledge: hit that bucket list now & live it ALL up! Do everything you always wanted to do. Go everywhere you always wanted to go. We're all gonna get something. May you be blessed w/peace, good times & longstanding health! 💜
Darling live everyday and don't let this steal your healthy years remember you could have been negative and get hit by a bus in your thirty's we never know what is a head of us and kick the hell out of the next twenty years and have double the fun ❤️
Heart breaking. Beautiful family. Praying for a cure. Praying for all who carry this gene. Thank you to this family for courageously educating us all. WE MUST HOPE FOR A CURE.