What Is JHD?

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Karli

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 years once diagnosis has been made , 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.  There’s so many more then that!! 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..

2

truth

good reference: http://www.hdsa.org/images/content/2/4/v2/24235/HDSA-Juv-horiz-13e-part1.pdf

Kids with JHD are quite special young people with invaluable lessons to teach anyone who’s life has been touched by these kids.


How To Help JHD Kids
Be there for them, spend time with them, get to know them, support em through the good and the bad, try to understand what they’re going through.

 

9 comments on “What Is JHD?
  1. cindy dupree says:

    this is awesome!! the mukka family are soo strong…i love em to death, i have a heavy heart with the loss of you’r family members, karli was such a wonderful kind child, karl was so loving, strong, and erika, jacey and jane you all are still an inspiration to so many..love ya cindy dupree

    • jennifer says:

      I don’t have JHD but I wanted to thank all of you strong families for being so strong. I have had to go through some pertty hard things in my life too. I was born with a simalar condition call Hydrocephaus and it basicly means water on the brain. I was bron with too much fluid in my head so the doctors needed to put a shunt in my head to drain the fluid. When I was 6 I fighured out that it wasn’t working right so they needed to go into surgery to fix it. I ended up getting and infection in the surgery and I needed to say in the hopital for 3 mounths. I had 10 shunt revisions at that time. I’m 15 now and I have had 21 revisions so far. But I wanted to let you guys know that I really care and I really want to help and I’m going to do all in my power to do so.
      God bless all of you for being so strong. 🙂 ❤

  2. Debbie McMillan says:

    Thank you for including my son Bailey in the above photo. He was at school where they have ‘messy play’ which involves finger painting, painting their handprint onto paper etc. This day Bailey got into mischief and covered himself in yellow paint – the Teachers and Aides at his special school loved it so much they took this photo of him enjoying himself. I am just glad they cleaned him up before I picked him up from school. He passed away 29 April 2009, the same date Karl Mukka died on one year later. Love to you all who have created this wonderful site. xx

  3. We must find a cure and put an end to the suffering and heartbreak of many children.jq

  4. You have done an amazing job in developing this website! I’m so proud of you and the work you are doing! You truly embody my belief that a single person CAN change the world! Thank you for sharing, for caring, for reaching out to the rest of the world.

  5. It is an absolutley wonderful thing what you all are doing. Working together we Can and Will make a Difference. Sending out prayers to all these precious families. Thank you all for ALL that you do to make a Difference everyday.

  6. Paula L Mundy says:

    Your family is so special to us, especially now that Dan’s daughter Kayla has been diagnosed with JHD. She is 9 yrs old and I know the strength your family has shown with be a light to guide us through.
    Thanks for all you and your family share.

  7. eboulav says:

    My prayers go out to all of you! Im tweeting this website to every person I can. I hope it helps fill these bucket lists. Love and Blessings always, Elaine

  8. Dolores Torres Nogales says:

    JHD is real and it suxs we have 2 wonderful Grandkids with this horrible disease…. Jasmine is 17 yrs old and chris jr is 15 yrs old Jasmine is wheelchair full time chris was also diagnosis with Parkinson’s Disease a year ago their father passed away from HD a year ago their aunt is in her final stages… We need more Awareness and a cure…

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Welcome To jhdkids.com Where You Can Read These Kids Stories And Learn More About JHD And How Different It Is In Kids Than Adults
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