More Help For Juvenile Huntington's Disease

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jacey mukka
jacey mukka signed this petition

Enroll-HD Needs To Do A Natural History Study and Do A Registry. A Person at CHDI they don't have a rating scale for Juvenile Huntingtons Disease so they can't do a natural history study, all they can do is collect data to create a research scale for jhd. Most of the kids have passed away that have been in Jane Paulsen's natural history study. Most of us aren't alive still, the ones who've past have left behind a legacy for research, where's our rating scale?! HDSA has advocated for the natural history study through Enroll-HD. These kids are trying to get help and can't get it because Adult Huntington's Disease is always first, but even the mice used in adult hd hope kills mice with juvenile hd. We need to step up and show them how much we all want this!! Our Kids Belong In Enroll-HD Because It's A Global Established Network Where They're Going To Take The Researchers From It's The Best Bet For These Kids.

Juvenile Huntington’s Disease is a Neurological degenerative terminal brain disease, meaning it’s a disease that affects the brain and over time keeps getting worse and worse until they pass away (defeated the jhd) is how i like to see it for them , and all kids are different on how they show their symptoms, no child the same.
…JHD refers to Huntington’s disease has an age of symptom onset from Infancy to 20 years old. JHD takes away all of a kid’s abilities over time, so for a kid it makes it hard for them to do simple things like go outside to play with their friends on the playground or even blow out their birthday candles. There are many milestones that these kids might never experience. It slowly takes away abilities and worsens and worsens until they can’t do anything, and then they sadly pass away from it within 10 years. No Cure No Treatments.

JHD occurs before the brain is fully developed compared to HD. It accounts for the wide variation at one age of jhd to another. Maturation and Neurodegeneration occure at the Same Time as the other(growing up while getting more progressed). A diagnosis is a beginning not an end. Juvenile Huntington's Disease is also fast acting in children they're lucky to get more then 10 years. Symptoms may come and go and the age of development and presentation of symptoms, combined with the lack of professional experience with these kids might be factors in untimely or miss diagnosis and lack of understanding the kid’s full needs. This can cause too many difficulties for family and professionals caring for these kids.

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