Testing for HD

Still Coping with my Test Results a Year Later

Submitted by Marsha Miller Ph.D. on Tue, 04/12/2011

smiling sara

I had known since I was a kid that Grandma had had HD, and that I had a 25% chance of getting it, but felt that as long as my Mom was healthy, we were all safe. I never worried about it until the day that someone outside my family said "Do you think your Mom might have what your Grandma had?". I instantly realized they were right, and from that day I could not get it out of my head.

A Long Time Ago

Submitted by Steve Ireland on Tue, 02/03/2009

Tim and Karen

We wanted to know. It was 1991. If Karen’s Huntington’s Disease gene linkage test was positive, we would plan our life together accordingly. If the test was negative, we would be relieved and plan our life together as any other twenty-something couple. We met in the mid 1980s and were married in 1989. Karen’s paternal grandmother passed away from Huntington’s Disease (HD) a few weeks after we met. Karen told Tim about her grandmother’s disease at that time a

HD Testing - my story

Submitted by Steve Ireland on Sat, 11/10/2007

Joan E.

When I was 9 years old, my dad was diagnosed with HD. He didn’t know it was in his family because as a young boy he had been sent to live with family members away from his siblings. No one ever told him. He married my mom, had three children and in his early 40’s was diagnosed. My sister (2 years younger than me) was diagnosed at age 23. At age 30, I decided to have a child. I had thought about it many times, the pros and cons, and decided that I didn’t want to, at age

Deciding to Continue Testing for HD

Submitted by Steve Ireland on Fri, 11/02/2007

Andrea H.

The decision to complete the genetic testing for Huntington’s disease was certainly a difficult and painful decision; however above all, it was a personal decision. Of course, as someone who is extremely close with family and friends, I talked to just about anyone who would listen to me regarding the question of whether or not to be tested. Although the process of “talking it out” was useful in so many ways, both intellectually and emotionally, when it came down to it, no o

Testing negative and remaining positive

Submitted by Steve Ireland on Sun, 10/28/2007

Michelle

%TR% My mum has had HD since I was about 14. She was diagnosed when I was 16. The week she found out she was positive with HD I found out I was pregnant (not a pleasant week!) but from then on I have lived at risk of HD . There was talk about me having an abortion, I guess for two reasons, age and the HD gene. I wasn’t prepared to terminate the pregnancy so from that point forward my at risk status become a big part of my life and over time it became more powerful. Over the years I alw

Testing, my own personal roller coaster ride from .....

Submitted by Steve Ireland on Sun, 10/28/2007

DCB

%TR% I am writing this in Mid October of 2007. Six years ago at this time I had a new baby who was just a couple of weeks old. I had decided to be a stay-at-home mom, and life was going great. I had never heard of Huntington’s disease and to my knowledge we didn’t have any medical issues in our family. Little to my knowledge, this turned out to be the time my life was about to take a roller coaster ride that was the most frightening ever. With more turns and spins than I would ha

Rikki's story

Submitted by Steve Ireland on Sun, 10/21/2007

Myrna

%TR% My Story with Huntington's disease began in 1979, when I met Rikki's father. I was 18. We didn't stay together very long because of his behaviours, which I learned later were often typical of HD. For years I just thought he wasn't a very nice person. During the time we were together he once told me his father had died of Huntington's disease, but he didn't explain much and I had no idea of it, so I didn't ask further & just accepted it. Never once did I consider HD or its consequences.

Testing my two children for JHD

Submitted by Steve Ireland on Sun, 10/21/2007

Amy D.

%TR% I would like to share with you our experience with genetic testing. My husband and I adopted two children who were at risk for HD from their birth mother. We knew the risk, but we figured this would be something we would deal with in adulthood. When our children began having problems and doctors were putting them on medications without diagnoses, we asked, "What is going on? Why these medications: What are you treating them for?" Finally, we were referred to genetics doctors and they

Testing Positive: Planting a Lemon Tree

Submitted by Steve Ireland on Sat, 10/20/2007

Lauren

I come from a family (at least my mother's side of my family) who deals well with stress. They take the punches of life as they come, and in that I am so grateful. I don't know that I would have been able to deal with the results of my testing without the strength they ingrained in me. %TR%As most people who go through the process, I went in for the genetic counseling, weighing the pros and cons of getting tested for Huntington's Disease. I had known since I was 15 the disease ran in my fami

An Overview of Testing for Huntington's Disease

Submitted by Marsha Miller Ph.D. on Sat, 10/20/2007

Confirming a diagnosis The development of the DNA test has been very useful for confirming a diagnosis of Huntington’s Disease that a physician may make based on clinical signs. The DNA testing is especially helpful for those with earlier or later than average onset as well as when someone develops HD without a family history. A Canadian study reported that a quarter of those who tested positive were unaware of any family history of Huntington’s Disease. The reasons for this wer