The Huntington’s Disease Alliance UK and Ireland was established to promote awareness of Huntington’s disease and improve support for families across the UK and Ireland. The Alliance consists of four independent charities across the UK and Ireland; Scottish Huntington's Association, the Huntington’s Disease Association Northern Ireland , the Huntington’s Disease Association of Ireland and the Huntington’s Disease Association (which operates in England and Wales). The organisations within the Alliance share the common goal of helping people who live with Huntington’s disease to achieve the best quality of life possible. Collectively, the Huntington’s Disease Alliance also strives to universally increase understanding and raise awareness of the impact of the disease on individuals and families affected.
A video about this disease showed up in my RU-vid suggestions and I clicked because I’d vaguely heard of HD, but didn’t know anything about it. Oh my goodness, what a heartbreaking thing for families to go through. After watching quite a few videos, I’ve noticed that there seems to be a pattern of the people with this disease being quite artistically gifted until they cannot be anymore. God bless the people these days who don’t abandon their family members as the disease progresses. I say that because I’ve learned that just a handful of decades ago they might have abandoned them because they believed they were severely mentally ill or alcoholics, drug addicts, etc. This actually makes me wonder if some of the homeless people we are seeing in our large cities (I’m in the US) who twitch and flex and who we are attributing drug addictions to, might actually end up homeless because they have HD. I can imagine that in a less educated and enpoverished environment (which you can understand why that would come about), they just say something like it’s the family curse of addiction, get out. I wish someone could do a study. This is truly heartbreaking.
How can I put this, it must be somewhat reassuring knowing that you did not give her this cruel disease. As much as I love my daughter and would love her just as much unconditionally, I’d rather remain childless than risk passing it onto my offspring. It’s painful for everybody involved, people can do genetic testing combined with IVF to avoid your child inheriting the HD gene, but I don’t even think I could do that. Your daughter is lovely and endearing, it’s amazing that she has two healthy parents to love and support her on this life journey.
It is great that she has such wonderful parents but I cant understand that social services did not do due diligence and find this out. If you take on a child with Huntingdons that is great but not to know is appauling.
I hope that the current genetic diagnostics and hopefully a cure can lift this curse off people in genetic lines with this disease. The implications of being in a family with this disease are really horrifying especially imagining all the shame and secrecy and uncertainty before the disease was more understood. I admire people that keep a positive outlook with that cloud over their head, that takes faith.
I am in Invernessand I have found a treatment as I have a young man who I visit because he has been like a brother to my sons since his mother was diagnosed with HD 30 years ago and now he is quite bad himself and in care. The trouble is that although I got a copy of a mouse's brain free almost except one black spot of the tangles of protein, they have taken it off the net. Does anyone want to try cat's claw a rain forest bark as it seemed to help but they just suggested it might help with Alzheimer's and of course the drug companies want to make it into a drug to justify the high charges. God always provides a solution in the flowers of the field as it says in the bible. The patient has rejected it perhaps because his mind is already affected according to the medical people and I can't force him to try it.
I found a treatment as I have a young man who I visit because he has been like a brother to my sons since his mother was diagnosed with HD 30 years ago and now he is quite bad himself and in care. The trouble is that although I got a copy of a mouse's brain free almost except one black spot of the tangles of protein, they have taken it off the net. Does anyone want to try cat's claw a rain forest bark as it seemed to help but they just suggested it might help with Alzheimer's and of course the drug companies want to make it into a drug to justify the high charges. God always provides a solution in the flowers of the field as it says in the bible. The patient has rejected it perhaps because his mind is already affected according to the medical people and I can't force him to try it.
Why would her husband wait to get tested if his mother had it ?? They just buried their heads in the sand and had kids anyway knowing how high the risk is. And now they are encouraging their adult son to bury his head in the sand? Selfish and irresponsible.
I'm 25 and I also have juvenile Huntingtons Disease. I can barely move anymore and I've nearly died a few times from chocking on food and drink. I inherited this from my mum who died in 2018. She was only 44. I miss her so much.
@@keciaaskew5166 no it's different, it's a genetic mutation as well but it's basically the same as normal huntingtons' just more aggressive and earlier
Why do people with inherited genetic diseases procreate? It's cruel to subject other humans to this as they have no say it in. Please start adopting - its more sustainable and friendly to the environment too!!
Anna is beautiful and loving. The kind of daughter any parent would want to have. Gorgeous little Ginger, and her personality seems so much like her parents. Sweet, gentle, positive, and content. She has a wonderful family.
I fail to understand why some people are willing to have child after child hoping that one of them hasn't inherited a deadly disease. I'm not saying this is the case here, but I know it happens. I can understand why these kids wouldn't want to know if they carried the gene as there currently is no cure. However, I'd want to know at some point so I could decide whether or not to have children or have my embryos genetically screened before implantation. Bearing in mind, the child I brought into this world would likely have to care for me at some point; a heavy responsibility for any young person to deal with where the child could also have inherited the disease and now sees their future staring back in the face of their sickly parent. Genetic and family counselling is so important in these situations.
I think it depends my grandad had a hereditary form of muscular dystrophy although its a mild form of it and he could still walk into his 60s and even 70s. my mom actually has it and is quite asymptomatic at the same age when most would be having more difficulties and im still good in my 30s while he had symptoms as a young kid. bit the type we have has incomplete penetrance so I dunno I guess it depends. We have a form that is 50/50 but the symptoms can be really mild hence why my mom has it very mildly. But from what I understand Huntington's gets worse with each generation.
@@tasidasilva7897are you a woman? Because of you are it really sounds like your disease is x-linked. X-linked illness es are 50/50 but they affect much worse than women. Genetic counceling is still really important to make sure people know exactly what they are up against. A lot of women with x-linked diseases never get diagnosed until they have a boy with it. I know that because it happened in my family. Huntington's typically gets worse if it's passend down by the father because the mutation is much less stable in the sperm
Thank you for your story. It encourages me as my children, aged 35, 37 and 41. None have symptoms. I lost my beloved husband June 11, 2022. I am happy to see that you tested negative! God bless your future
Anna is not remarkable BECAUSE she has Huntingdons, Anna is remarkable because of her outlook and character, passion for life and her solution-focused attitude. And though she has this terrible illness, she is not defined by it. Thank you for sharing your story Anna.
My mum died of this in 95 she was only 58 all we were told was that it was hereditary but to this day neither myself or any of my siblings have been tested or counselling given so we're no further forward than we were nearly 30 years ago shocking really
Anna is a lovely young lady. I wish her and her family all the best. It’s so important to have loving and supporting parents, which she definitely does. Miracles do happen. I hope they either find a cure or better therapies to help stave off the effects of Huntington’s. Much love to Anna and her family 💕
