Speaking Out ~ Living With HD

Message For Young People

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A Message For Young People Living With Huntington's Disease

By Jean E. Miller – Adult Advisor the HDSA NYA
A Message For Young People Living With HD

It's difficult enough being a young person in today's world; it's harder yet when you have someone in your family who has Huntington's Disease. There are probably are many times you may be feeling that you have no one to talk to about your feelings who can truly understand. You may be experiencing the following:

  • Embarrassment over the behavior or chorea of a parent or relative.
  • Frustration over the reaction of ignorant strangers towards a parent or relative.
  • Anger over what you feel HD has robbed you of in your life.
  • Hurt or fear of having to help take care of a parent or relative with HD.
  • Very scared about your own at-risk status and future.
  • Feelings of hopelessness, sadness or depression that you can’t seem to shake.

All of these feelings are natural and you shouldn't have to deal with them alone! It's important to talk about your feelings with a parent or relative. Sometimes you might feel 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. Or you may be feeling that their lives are too overwhelmed right now and you don't want to bother them. Believe me, your parents DO care and they DO love you very much! They would want to know if anything is bothering you.

If you feel your parent doesn't understand, and these things are affecting your day-to-day life, it's important for you to find someone you trust that you can talk to. You might want to try talking to:

  • An HD Social workers at your HDSA Chapter or Center of Excellence. They would be more then willing to try and find the right resources to help you. You can check to see if there is one in your state on the Huntington’s Disease Support State-by-State website [see below] or call the HDSA at 1-800-345-4372.
  • Your school guidance counselor can also be very helpful.
  • Your place of worship probably has a youth advisor willing to talk with you.
  • Talk to other young people living with Huntington's Disease. The HDSA National Youth Alliance [NYA] is specifically to support all young people living with HD.

In any event, whatever you do, please don't try to handle feelings that are affecting you enough that they are making you feel sad, angry or frustrated or alone. There are many very caring people who can and will help you!

Remember that 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!

About Jean

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. You can read about Kelly and I in articles found in Our Personal Experience. Kelly wrote poetry in her teens, many where you can feel the isolation, uncertainty and frustrations she was feeling when JHD first started affecting her life. The reference to where those can be found is shown below.

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.


Huntington's Disease Society of America

HDSA National Youth Alliance [NYA]www.hdsa.org/nya

HD Support Information State-By-State https://endoflifecare.tripod.com/id156.html

Our Personal Experience~Jean E. Miller

Jean's and Kelly's Poems