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.
There is NO CURE.
Please help us find one.
Kids who develop symptoms at a young age have a variety of differences in how the disease progresses. than of that of an adults. Jhd progresses more aggressively and their lifetime is anywhere between 3 to 10 but in less aggressive cases they could live a lot longer, this does not always hold truth for all cases.
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.
Only an estimated ten percent of people at risk for Huntington’s Disease develop the juvenile form, but it’s hard to get accurate numbers. Juvenile Huntington’s disease (JHD), defined as HD arising before age 20, accounts for 5-10% of HD cases probably even more!! The younger the onset, the faster the progression. Which makes it harder for family, friends and even doctors to cope with.
- A huge question might be, when should we be concerned that my kid might have JHD? Due to the variability and the truth that kids are developing and growing, and many other factors, the best answer would likely be “when there is an obvious change”, particularly one that is impacting the kid’s quality of life. There is approximately a 40% chance that someone who develops JHD will develop epilepsy. Some ways to tell if someone may have JHD are if they have a decline in school, behavior issues, personality changes ,impulsiveness, memory loss, difficulty with comprehension, balance or movement difficulties. The list could be quite long.
- A significant question might be when should we test the kid? This has been a confusing question. The response will vary dependent upon who you speak with. NO one wants to give a kid a terminal diagnosis. A diagnosis is a quite serious step, keep in mind, diagnosed or undiagnosed if someone is symptomatic their genetics will not change. Taking the time to be sure everyone in the immediate family is as prepared as they can be is likely invaluable, while weighing the kid’s care and needs for treatment in this process also. An experienced genetics and or pediatric neurology team is important in assisting the family along with involving a social worker with the HDSA.
It’s always important to not place expectations on a kid with JHD, adapting their world to them, vs. adapting them to the world. Keeping in mind that all changes are not necessarily permanent, a kid may be unable to walk one day and then the following day walk again as if there had never been an issue. On the other hand it might become a chronic thing then is most likely the jhd. MOST IMPORTANTLY to keep in mind that just because the kid is terminally ill with a degenerative condition DOES NOT mean there is no HOPE or that nothing can help. Diagnosis is a new beginning NOT an end.
Loss of motor control will make test taking slow and confusing..
Kids with JHD are quite special young people with invaluable lessons to teach anyone who’s life has been touched by these kids.
Here are resources that will help you learn more about jhd and what to do:
Here’s Advice From People Who’ve Gone/Going Through Juvenile Huntington’s Disease
This is a list of places to go for support
This helps with more learning and helping the symptoms
This is where you can find stories of the families