Speaking Out ~ Living With HD

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Amy At~Risk
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Amy is 10 years old and, along with her brother,  is  at-risk for HD.

What Issues Do You Deal With Living With HD That Is The Hardest For You?

Knowing that someday I may get it.

Has Living With HD Affected Your Education?  (Absenteeism/Lack of Concentration/etc.)


What Things Do You Do To Help In The Care  of an HD parent? Do You Feel This Is Fair?

I really don't have to do much for my dad because he lives in an assited living home butI go and take him to lunch and to the park. Yes I think it's fair for me to take him places 'cause he use to do the same for me.

How Does Helping With Your Parent's Care  Affect You Socially? Personally? Financially?

On Saturdays I can't make any plans 'cause that's my time to spend with my dad but I don't mind that 'cause I love my dad.

What Advice Would You Give to A Young Person  Living in A Volatile HD Family Environment?

To love their dad and know it's not his fault it's the HD making him that way.

How Have You Handled The Anger You May Feel Living With HD? What Has Worked Best For You?

I try to tell myself the glass is half full. I pray that they will find a cure before I get older.

What Is The ONE Thing In HD That You Are Most  Afraid To Discuss With A Parent? Why?

My uncle Scott having to live with a feeding tube. Because it just makes me cry.

How Open Are Your Parents In Discussing HD With You And How Does This Make You Feel?

My mom is very open to talk about it. Happy 'cause she cares so much for me.

What Things Have You Done To Help You Live  With Being At Risk For HD?

Prayed, Talk to my mom, and remember the glass is half full

If You've Tested HD Positive, What Are Three of The Most Important Things You Feel Would  Help You?  Are You Getting That Support?

I'm to young to test but will when I am 18.

What Type of Support Is There Available In Your Area For Young People Living With HD? Would  You  recommend This Support To Others?  If So, Please list Contacts.

There is no support group for my age .

Would You Be Willing To Communicate With Someone Your Age Dealing With These Things? If so, please show how to contact you.