The Community: International Huntington's Disease Voices!
By James Valvano - September 28, 2012
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By James Valvano - October 18, 2012
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By Melissa Biliardi - September 30, 2012
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Have a story to tell?  
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Huntington's disease community?

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By James Valvano - November 3, 2012
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The first international newspaper for Huntington's disease!
Education - Resources - Information
What is Huntington's disease?
© Copyright by All rights reserved: 2012
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"When you finally get your children grown,
married and happy, you think you can breathe a
sigh of relief.

Not so with Huntington's Disease. Just when
everything is going well, here comes the

All of a sudden the child you raised hates you
and accuses you of everything imaginable. And if
you aren't familiar with the HD monster, you have
no idea the reason. People that you thought
were your friends believe all the horrible lies. So
you figure if they don't want you in their life, you'll
just stay in the background and just be there
when they need you or need money. You get to
listen while everyone else is invited to
gatherings but you aren't.
anymore they move back with you. And since the child can no longer hold down a job and has no
insurance you start maxing out your credit cards trying to get them help. Even though the child can no
Medicare and they can't get Medicaid because SS says they aren't disabled. Your child goes through
addictions either alcohol, or drugs. So you keep going from doctor to doctor trying to get help while
constantly being told that they hate you, throwing things at you cursing you and wishing you were
dead. You keep buying them new clothes getting there hair done, take them out to eat, thinking if they
would feel "pretty" it will help, 'cause you know nothing about HD. You keep trying to get help, because
that's what mothers do. Then when they are finally diagnosed you think "now we have a name, now
we can fight this." Because you don't know the monster HD... your child gets on meds and your child
FINALLY LOVES YOU again.. then HD wins the battle on their body and God takes them away from
you, FOREVER...Oh but it doesn't end then, if you have another child that starts showing the
symptoms and does everything to destroy you, they sit around telling everyone how "you didn't care for
the patient properly" although the one running their mouth did nothing, not even a visit..and of course
everyone believes their lies also...this is just a little of what HD parents/spouse caregivers live
through.. This my friend will not show up when you Google Huntington Disease but believe you me
HD is a far much worse monster than Google says. And that is not including all the horror and mental
anguish the HD victim suffers. Plus the loneliness of no visitors. Google doesn't really even come
near describing what a person that suffers with HD goes through."
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