JHD InitiativeKids Helping Kids With Juvenile Huntington's Disease and Their Families Alike The Juvenile Onest Of Huntington's Disease Sharing Personal Stories And Faces Of Kids For Awareness Helping Relating And Understanding
They say Juvenile Huntington’s Disease, used to be called parkansonianism, is extremely rare, than why are so many people showing up? You might think we found most of the kids with jhd, but the truth is this is only a small portion of them.
Just because it say’s jhd and hd on it, doesn’t mean it helps the kids too. You have to be careful.
Huntington’s Disease and Juvenile Huntington’s Disease behave differently.
Tests like swallow studies, ekgs often, most the time, come back normal, even when it’s not normal, they just can’t catch it. They have to catch it during an event of it.
Many people just call them spoiled or lazy or bad kids.
Kids don’t want to go do things, they’re just making excuses, myth!! They know what their body can handle and can’t
Their brains don’t lose neurons, they get damaged and scarred.
The immune system is in overdrive. It never turns off.
jhd causes your teeth to go bad even if you take care of them all the time, something the dentists don’t believe but it is true.
This is a ridiculous fact but true, jhd causes earwax build up way more than normal.
Your nails grow faster.
jhd makes your hair fall out, you won’t lose all of your hair with it, but your hair will thin and you might even need to get hair extensions if you want to make it longer again.
It may seem normal at times, but it can cause you to hop at random moments. Not even parents believe me there. I believe it though.
The doctors scale will probably tell you that your weight is normal every time even if it’s fluctuating all the time
It can make your heart stop and you can fall and turn blue, and than get right back up, it makes your heart go fast, slow, anyway it wants it to really. It can become irregular.
If it’s there, it exists, at one point you stop reasoning why and start saying it’s just there, your stomach hurts your throat feels funny, it’s just there.
Being itchy is neurological pain just in the form of being itchy.
Often run low grade fevers.
Eye sight and depth perception affected gets worse.
Symptoms can come and go.
They can get sicker than better than a lot sicker, etc.
They get sleep disorders, they can stay up for days.
They have it present stronger on one side of their body.
The feeling/ textures of clothing, sheets, socks, jackets, everything could bother them, it’s easier to let them pick it out and feel it themselves.
They say a small percentage gets seizures, but they’re finding it’s closer to half or more.
They stay particular on one type of food, one type of flavor for a long time.
Too much stimulation upsets them.
Nothing is sudo. You can’t catch it by watching someone else have it.
Each child’s different even in siblings.
The kids don’t like change.
They are not the disease, be mad at the disease not them.
Extreme nervousness, that may often cause stomach aches even for simple things like doctors appointments.
Random dystonia in any part of you, it can feel like severe cramps in your legs or toes etc. It can attack your whole body. Even all at once.
The scales for adult huntington’s disease stages don’t work for jhd kids
Chronic hemroids can be common in jhd.
Menstrals can be a billion times worse in jhd because they develop cysts.
Regular pain medications and sleep medications don’t work they often have the opposite effect and keep the child awake instead.
You can feel like you have to go to the bathroom all the time even if you don’t have to.
It can burn a lot of the time when they go to the bathroom even without a uti.
Your ankles can turn in when you walk, your feet can turn out or sideways, or you can toe grab, it’s grabbing the floor with your toes when you’re walking.
They can tell you that you don’t get side effects when coming off a medication, they’re way wrong, especially don’t remove it right off.
Sicknesses are often piled on eachother, uti with flu, or cold and infection etc
Dystonia can move parts of your body around.
It can cause blood sugar issues where you all of a sudden get extremely shaky and need peanut butter chocolate and real food.
Therapies can often do more harm then help, watch what they’re doing when they’re with them. Voice your opinion if you think something’s not right
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