The Huntington's Disease Youth Organization (HDYO). We're an international non-profit organisation supporting, educating and empowering young people, up to 35 years, impacted by Huntington’s Disease around the world. We provide a range of educational videos about HD for all ages.
Your story touched my heart cause I can definitely relate cause I love to run and my dad had hd❤️❤️❤️. I decided not to get tested until I got symronatic cause there’s no cure. My mom was harassing me to get tested as soon as I turned 18, but I said no cause I didn’t want to be thinking about it all the time. I’m from Los Angeles and there’s a lot of things I did a lot of things with family and friends. Some of my favorite things to do were clubbing, my drinks, shopping, traveling, driving, rode trips, cooking,baking from scratch, bbq, music concerts, movie theater, restaurants,pool, bowling etc. I’m so happy that you texted negative, but if you were positive at least you had your husband to support you ❤️❤️❤️. I’m single and I don’t have any kids, but I have my family and friends who are very supportive of me ❤️❤️❤️. I I’m 39 and I tested positive, but I’m still happy and positive. I’ enjoyed my life to the fullest and I did all these things cause I’m a surgical RN.
Lucas saved his mother found his family found his dad.. When i watched the movie it broke my heart, Lucas was so brave protecting his mom and everything and finding the other guy family of 3
Just recently tested positive for HD gene. I'm 25, male with not symptoms whatsoever. My grandmother at 65 started to show symptoms of HD 3 years ago and was ultimately confirmed the following year. Mother already died (not with HD) of cancer when I was a kid so we couldn't tell if she inherited the gene. My brother at 22 tested positive with the gene. While my other 3 siblings refuse to know their status even after having children of their own. With my condition, I decided not to have a kids unless I could afford PGT in the future. I think it's very selfish for someone to conceive if they know that they are at-risk of having the gene.
ANY kid with ANY disease is fucking horrible and unfair. Kids aren’t meant to suffer, they never should. At least give these damn kids a chance before they are diagnosed with a disease. Life is truly cruel sometimes. But still, these kids are absolute blessings. They are different but they are unique and beautiful in their own ways.
I cried a lot 😢 and I'm so happy for you, in my country there's no specific test for HD and I'm 39 and I started getting worried about some symptoms I have. I hope I can be that happy you are and free my two children of the burden ❤
Huningtons Disease is a horrible disease! I feel for those who have it. But, if the person with the disease chooses to have kids and subject them to that misery. It is damn right selfish! Why? Because you want a child! You can adopt.. your parents did you a disservice by bringing you into the world and they knew they had that curse! Not to say the cost that will fall upon the state to take care of these people with this disease. Those who are afflicted can get the disease as a minor or and adult . To say I am going to go on with my life as normal and have kids. How fucking selfish!!!
My fiance lost his first wife to it. They had 4 kids. Her mother had been diagnosed with dementia, so they did not know. My friend's oldest had it. #3 child died in an accident. The wife's family was large with 7 kids. 6 had huntingtons. My fiance died from type 1 diabtes. I had a talk with his late teen daughtrr. She said she wiukd be tested. Turns out she did not and had 2 children. She now has or had huntingtons. I only know what i can find on facebook. Assuming she is in care or dead. She has ruined the lives of her chikdren and husband and maybe passed it on. It ruined her father's life and all of his children. It could be erradicated if all were as responsible as this young man
Javier, como ya sabes, siempre nos encanta escucharte. Vuestra familia sois un ejemplo a seguir y las familias afectadas por EH tienen mucha suerte de poder seguir vuestros consejos. Gracias por todo lo que hacéis
I have never met someone as brave as Luís. He is such an inspiration for other human beings. Thank you for sharing your story, I don't know how painful this must have been , but it will remain as a gift for others. ❤
Its the Diet!!! Check out these doctors on RU-vid: Dr. Ken Berry, Dr. Anthony Chaffee, Dr. Shawn Baker, Dr. ERic Berg, Dr. Darren Schmidt - all on youtube!!! Please keep open mind. Carnivore diet - eating only animal products - heals the nervous system and neurons in the brain. Our foods are destroying our health. We must get back to the foods that we were eating prior to 1900. We ate more fat, cream, butter, beef, bacon, eggs, - our bodies make cholesterol if we do not get enough. Seed oils are destroying our health. They did not exist prior to 1880. Do not eat packaged foods, only one ingredient foods. NO SUGAR. SKIP FRUITS UNTIL YOU ARE HEALED THEN SLOWLY BRING BACK. Fruits and vegetables were seasonal foods and fermented for preservation, not canned. God gives us things in the world for vitality. We must save ourselves and the next generations.
My condolences to all. This makes me so sad. The strength and beauty of these kids is astounding. With all the stupid crap on this planet, think of these kids and how much they have contributed to humankind.
Such a great outcome. Beautiful story. Pain is still there for others. Feel blessed and continue the fight for a cure. It's a horrible experience and hurts everyday. #help4hd #curehd
My dad has the disease, its so hard because we don’t have any support from my dad’s family. My mom takes care of him and it’s super hard for her and it’s really hard to me watch this everyday and be a part of it. I’m so scared of me or my brother having it and I get angry at my parents for not being more thoughtful and not make the decision to have a child when the sickness runs in the family. I just hope to god that we don’t have it and I’ll be super careful when it comes to having a child.
This decision isn't difficult, if you are at risk with HD... DON'T HAVE CHILDREN... I have a child dying from this disease and you keep risking chldren. NOT HARD, STOOOOPPPPPPPPPPPPPP HAVING CHILDREN, then it ENDS.
I am so sorry....the hard truth is horrible.....my wife passed away from HD...she never informed me of the DISEASE HD. We have 2 children my son first my daughter second. My daughter Mariah has HD.....this is very hard for her and myself...so hear is the solution... if you are at risk dont have CHILDREN. the risk of 50/50 is not worth it when you watch your child go through this. VERY SIMPLE STOP HAVING CHILDREN.
Huntington's symptoms don't usually show up until later adulthood, mid- to late-30s, 40s, even 50s, usually after they've already become parents. Until recently, there was no other way to know but symptoms starting... and even then, it was often misdiagnosed. Now there's a genetic test. A lot of people who have children suffering now did not know they had the HD gene. The family I know that has it had no idea anyone in the family had it until they already had two children. The mom showed symptoms after that. They knew there was some kind of spasticity in a relative, but not that it was Huntington's and not that she had it. Her own parents hadn't shown it when she had children (I think one had been misdiagnosed & then died young). Severity and age of onset vary so widely... don't assume anyone knew. Until someone in the family is correctly diagnosed, no one has any idea they're at risk, and many have never even heard of it. I don't think my friends would ever have risked having children had they known. The juvenile form is not very common. HD is a repeated genetic sequence normally; having a lot of extra repeats is Huntington's. The more extra repeats a person has, the more severe the case and the younger the onset. So even in a family, everyone's can come on differently and at different ages. Please don't judge with assumptions.
People with HD need to stop having kids bro, adopt them instead, so that you don’t pass on the genes. God bless every kid who has to consider their chances of living past 70, or takes a test to determine how short their lives will be.
Gracias por este aporte. Me siento completamente identificada en la situación de Javier. Cuide 12 años a mi esposo y no es facil encontrar información competente en diferentes idiomas fuera del ingles. Mucha fuerza y paciencia para todos los cuidadores. Con amor se puede todo ;) 😅
Families should not be having biological children 50% chance is still a high percentage our family suffers with JD we lost my great grandfather, grandfather I lost lost many many aunts and uncles.. my mother does not have it, so I chose to have a family of my own. We are in Canada Ontario
