My name is Jean Miller and I live in Clearwater, Florida. I got involved with HD
because my only child, Kelly had the juvenile form of Huntington's. She was
diagnosed with JHD at age 16.
Kelly's pre-teen and teenager years were very hard for her, a lot was probably
because of JHD which we didn't know about at the time. Like her Mom, Kelly
loved to write. A lot of the feelings she was having during these hard years can
be shown in her poetry. Two of her poems are shown on the last page on this
site, the rest can be seen at the following website:
Kelly was a fighter!! During those difficult years in her life, the support of therapists
did a lot to help Kelly deal with problems she was having with drugs and alcohol.
Later she fought very hard to maintain her dignity, respect and self-esteem having
to live with JHD. She had a heart of gold and always had her hand extended out
to friends and strangers alike.
It's difficult enough being a young person in today's world, it's harder yet when
you have someone you love with Huntington's Disease. Sometimes it may feel like
you have no one to talk to about your feelings who truly understands. You may
experience the following:
All of these feelings are natural, but you shouldn't have to deal with them alone.
It's important to talk about your feelings, hopefully with a parent or relative. It
may seem sometimes like they don't have the time to sit down and have a serious
discussion with you, especially if they are working and caring for someone with HD.
But they DO care and they DO love you very much. Sometimes their own lives may
seem overwhelming and you don't want to bother them, but believe me, they DO
want to know if something is bothering you!
However if you feel your parent doesn't understand and these things are affecting
your life, it's important for you to find someone you trust that you can talk to.
HD Social workers at some HDSA Chapters or Center of Excellences would
be more then willing to try and find the right resources to help you. You can
- School guidance counselors can also be very helpful.
- Your place of worship probably has a youth advisor
Talk to other young people living with Huntington's Disease. The HD National Youth
Association (NYA ) has a chat room on Yahoo or you can go to their website and
Invite those you know living with HD to join you in the Chat Room on this site.
A lot of the information on this site came from Kids Health and explain the various
things that you or a friend may be experiencing or going through. I've copied them
in their entirity so they'd all be located in one place for you to read, but please
visit the KidsHealth website because there's tons more of excellent information that
I didn't include here. Some of these articles may also help you understand a parent
with HD who may be experiencing some of these conditions.
In any event whatever you do, please don't try to handle feelings that are affecting
you enough to make you feel sad, angry or frustrated alone. There are many very
caring people who would and can help you!
Remember, YOU are unique and special! There is only one of you in this entire world
......and you mean the world to your parents and family!!