Living with Huntington's Disease

I am 25 years old. I am married with 3 children. Our three kids are aged 4, almost 2 and the baby was born 5-17-07. I am HD gene positive.

When I was young my great uncle was in the late stage of HD I remember he was the funny uncle who walked slow and laughed at inappropriate times. That is pretty much all I remember/knew back then. He died when I was still young. Growing up I knew HD was a part of our family, that it was in our genes or whatever. There was at that time no one living with HD symptoms or known gene positive.

When I was 14 or so my paternal grandmother was diagnosed with early stage HD. Until about that time we were told by doctors that females could not get HD. We knew otherwise but that is how much a general doctor knew about the disease.

My father decided to be tested after that. He was diagnosed gene-positive when I was 15. I knew then that I wanted to be tested and if they would have let me I would have done it right then and there. I wanted to plan for my future. Of course, I had to wait till I turned 18.

My aunt was diagnosed gene-positive sometime after that. My family talks about HD but for some it is really tabu. Another aunt who was tested gene-positive after me, will not tell her teenage children becasue she doesn’t want to scare them. Others don’t want to be tested because they think if they don’t know they will live healthy longer. Others don’t want to know they are gonna die. Some of my cousins want to be tested but can not be becasue there parent has not been tested. HD has brought some of us together and torn some of us apart.

As soon as I turned 18 I called the genetic counselor and made an appointment. I went through numerous counseling sessions, a psych test, and the blood testing. All this took about 6 months. After the blood test the results were in in 2 weeks. From the time they were in and the time of my appointment my Dad was arrested. I decided not to recieve the results until after the trial and things had settled down. At the end of January, age 19, I decided it was time so I called and made an appointment for March. I turned 20 in February and found out I was pregnant with my oldest child a week before my appointment. I could have gone but decided to wait until I had her. She was born in November. I made an appointment for The beginning of January, I don’t even remember the date anymore.

It was a huge family affair everyone was there. They put us in a little confrence room and we were all sitting there waiting. We discussed what the results would mean how I thought I would feel however the results came back.

Then she just said I was gene positive my repeat count and what it meant medically speaking. I just said ok. I guess I was living like I was already gene-positive so for her to say it meant nothing to me. Prepare for the worst, hope for the best.

After I went home I told everyone else who would be interested. I never really sat and thought about it. I had a little baby and was so busy. I have dealt with my results very honestly I believe but slowly. I feel a lot of guilt for my children. Well not so much now but I did. I don’t blame my dad for passing this to me so I know my kids wont blame me either. I think the guilt comes from wanting to give your children the best and knowing you may have given them something awful kills you inside.

I cherish the small things more than most people. I look for little memories I can give to my children. I want them to have all the moral, values, qualities I can give them while I am still good.