Jasmine Ann Demers
Jasmine Ann Demers
  • Видео 9
  • Просмотров 46 149
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
Просмотров: 45 940

Видео

#MeuPrimeiroAssedio/#MyFirstHarassment#MeuPrimeiroAssedio/#MyFirstHarassment
#MeuPrimeiroAssedio/#MyFirstHarassment
Просмотров 746 лет назад
A documentary with fictional elements featuring the voices of Brazilian women as they speak out against violence, harassment, and assault through social media.
Final Project - Domestic Violence in TucsonFinal Project - Domestic Violence in Tucson
Final Project - Domestic Violence in Tucson
Просмотров 536 лет назад
With thousands of cases of domestic violence in Tucson per year, government officials, local non profits and domestic violence survivors are doing their part to create a safer community.
JOUR 507 - B RollJOUR 507 - B Roll
JOUR 507 - B Roll
Просмотров 76 лет назад
Jonathan Rothschild, Mayor of Tucson, discusses the impact of domestic violence and what the City of Tucson is doing to combat these issues within the community.
JOUR 507 - Video A-Roll InterviewJOUR 507 - Video A-Roll Interview
JOUR 507 - Video A-Roll Interview
Просмотров 116 лет назад
Jonathan Rothschild, Mayor of Tucson, discusses the impact of domestic violence and what the City of Tucson is doing to combat these issues.
JOUR 507 - Audio Slideshow w/ Natural SoundJOUR 507 - Audio Slideshow w/ Natural Sound
JOUR 507 - Audio Slideshow w/ Natural Sound
Просмотров 196 лет назад
JOUR 507 - Natural Sound ProjectJOUR 507 - Natural Sound Project
JOUR 507 - Natural Sound Project
Просмотров 76 лет назад
Nathan Myers - Local Tucson Artist Artistic collaborations with sound and movement.
JOUR 507 - Natural Sound ProjectJOUR 507 - Natural Sound Project
JOUR 507 - Natural Sound Project
Просмотров 126 лет назад
Nathan Myers - Local Tucson Artist Artistic collaborations with sound and movement.
epai demers720pepai demers720p
epai demers720p
Просмотров 426 лет назад
Interview with 22 year old Starbucks Barista, Billie Conley.

Комментарии

  • @Fido-vm9zi
    @Fido-vm9zi 9 дней назад

    I pray for a cure! Best wishes!

  • @girogiro-vh5pz
    @girogiro-vh5pz 20 дней назад

    Very moving

  • @rhondacoleman630
    @rhondacoleman630 3 месяца назад

    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 .

  • @Runningfromtheherd
    @Runningfromtheherd 5 месяцев назад

    Hard to watch everyone has the "um" virus

  • @OsloNoWay
    @OsloNoWay 5 месяцев назад

    So why did your father decide to have two children?

    • @chellesama8256
      @chellesama8256 Месяц назад

      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.

  • @dairinnally5912
    @dairinnally5912 5 месяцев назад

    I'm trying to be kind, her life

  • @kerrykahle3772
    @kerrykahle3772 5 месяцев назад

    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.

  • @cathymarble3283
    @cathymarble3283 6 месяцев назад

    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

  • @TuckerOlson13
    @TuckerOlson13 7 месяцев назад

    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.

  • @myredpencil
    @myredpencil 7 месяцев назад

    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.

  • @identikid1
    @identikid1 8 месяцев назад

    Thankyou for sharing. Your so brave.

  • @fernemcallister6774
    @fernemcallister6774 9 месяцев назад

    I am so very sorry you’ve tested positive. Holding out hope there will be a treatment soon for HD.

  • @LectronCircuits
    @LectronCircuits 10 месяцев назад

    Huntington's Disease can happen to anybody at any time. Audience wishes hapless victims all the best. Cheers!

  • @daisysmum7336
    @daisysmum7336 10 месяцев назад

    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.

  • @vivalaleta
    @vivalaleta 10 месяцев назад

    Now that we know we can prevent Huntington's disease by knowing that you carry the gene and not procreating.

  • @jdmmg4904
    @jdmmg4904 10 месяцев назад

    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.

  • @Carolyngenea
    @Carolyngenea Год назад

    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.

  • @KathyFrost-v4s
    @KathyFrost-v4s Год назад

    My niece 28 , just diagnosed. 51 repeat .. we are all heart broken

  • @elanamccullum1677
    @elanamccullum1677 Год назад

    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.

    • @jdmmg4904
      @jdmmg4904 10 месяцев назад

      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?

  • @LovedbyYah
    @LovedbyYah Год назад

    😢

  • @ireneyoung8696
    @ireneyoung8696 Год назад

    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 🙏🙏🙏

  • @sandymuddy5766
    @sandymuddy5766 Год назад

    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!!!

  • @kibeast
    @kibeast Год назад

    Sorry for the positive results! You did a tremendous job on this film!

  • @mintro33
    @mintro33 Год назад

    Ever thougt of praenatal testing?

  • @joanarafaelaferreira6716
    @joanarafaelaferreira6716 Год назад

    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

    • @sylviekins
      @sylviekins Год назад

      So true. It can be like a time bomb, and the testing might not have been so reliable years ago.❤

    • @Fido-vm9zi
      @Fido-vm9zi 9 дней назад

      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.

  • @anitahermalin1849
    @anitahermalin1849 Год назад

    So sorry.

  • @teresacatherine3811
    @teresacatherine3811 Год назад

    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.

  • @wheatstonebridge
    @wheatstonebridge Год назад

    Im so sorry Jasmine. This is really rough. My dad has Parkinsons.

  • @victorialoveday9998
    @victorialoveday9998 Год назад

    I lost my husband to HD in June last summer. I pray for a cure.

  • @524FrmGrl
    @524FrmGrl Год назад

    I’m So so sorry

  • @connorcochran836
    @connorcochran836 Год назад

    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.

    • @524FrmGrl
      @524FrmGrl Год назад

      I’m so sorry.

    • @connorcochran836
      @connorcochran836 Год назад

      @@524FrmGrl Thank you for the kind words, Amy. They help.

    • @RIVKIBEN
      @RIVKIBEN Год назад

      That is heartbreaking, I'm so sorry 😢

    • @connorcochran836
      @connorcochran836 Год назад

      @@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.

    • @judithgibson2711
      @judithgibson2711 Год назад

      How sad for everyone

  • @hexhex7220
    @hexhex7220 Год назад

    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.

    • @elainereaper259
      @elainereaper259 6 месяцев назад

      People with the gene can have children via IVF where only embryos that don't have the gene will be Implanted

  • @hettyspee-bw9rb
    @hettyspee-bw9rb Год назад

    Why keep having kids

  • @specialist4luciek425
    @specialist4luciek425 Год назад

    One might not have but their offspring can? I mean can it skips generations?

  • @carolwisinski6247
    @carolwisinski6247 Год назад

    Q

  • @brucerazor5202
    @brucerazor5202 Год назад

    We all have our struggles , may god bless you all. Your not alone god just wants you to ask.

  • @mariaparsons7680
    @mariaparsons7680 Год назад

    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 ❤️💞❤️

  • @vikramanand2052
    @vikramanand2052 Год назад

    Let's all hope for a cure, or at least a treatment that meaningfully slows the progression of this horrendous disease.

  • @dalesansom3780
    @dalesansom3780 Год назад

    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.

  • @nerysbaiges4682
    @nerysbaiges4682 Год назад

    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.

    • @NickanM
      @NickanM Год назад

      In vitro is enough, no surrogate needed. Just IVF implant of screened embryos.

  • @furbabiesarefamilytoo
    @furbabiesarefamilytoo Год назад

    If you know you carry the abnormal gene, why have kids?

  • @acooksla
    @acooksla Год назад

    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.

  • @annanardo2358
    @annanardo2358 Год назад

    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.

  • @chupacabra3331
    @chupacabra3331 Год назад

    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.

  • @110311DONTWANTCHANNE
    @110311DONTWANTCHANNE Год назад

    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...

    • @wheatstonebridge
      @wheatstonebridge Год назад

      Yes, it is very selfish to have children (even adopted or with ivf egg donor.) Especially if you have over 40 repeats.

  • @amyv2838
    @amyv2838 Год назад

    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

  • @justjanexxx
    @justjanexxx Год назад

    Omg, how heartbreaking. That was so sad to watch. I hope you’re living your best life and know we care about you ❤

  • @jenn823
    @jenn823 Год назад

    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! 💜

  • @kathleendowner6506
    @kathleendowner6506 Год назад

    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 ❤️

  • @lynnemiller3633
    @lynnemiller3633 Год назад

    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.