Hi everyone.
I'm 25 and at risk. My mother tested positive in the late 1980's after her father tested positive. My mother is one of four siblings. Her siblings refuse to test, and refuse to acknowledge the disease to their children. Since she tested positive when we were so young (I am one of three), she used my grandfather as a way to educate us about the disease without revealing her positive status to us. We grew up with the knowledge of Huntington's Disease and when we were deemed old enough, my mother revealed her positive status with us. We have been very lucky, she is in her early 50's and still has not shown any signs of the disease (although a second test in 2000 confirmed the gene).
With that background, my question has to do with my siblings. We will be the first set of siblings in our family to accept our at risk status and who are willing to (eventually) be tested. We are not planning on getting tested tomorrow and my brother is still young (18 yrs old), but my sister (23 yrs old) and I are getting to that point in life where knowing our status is starting to become important. We both feel very strongly about 1- informing people we are seriously involved with about our at risk status, and 2-taking whatever steps possible to avoid passing the gene (if present) on to future generations. However, I fear the effect that getting tested will have on our relationship (as far as siblings go, the three of us are very close). Since my mother's siblings refuse to be tested, we have no basis of comparison. Has anyone been tested with siblings before? When the time comes, should we test together? I know that there is no way to predict how we will respond, but if anyone has any similiar experiences to share, it would be great.

Thank you in advance,
Mary

I have two siblings. My sister had obvious symptoms for 15 years before she agreed to be tested at the age of 40, and she did so only to be able to qualify for disability payments. By then, the bad news was not much of a shock to her or to anyone else. She is one of the few people with HD who has never been in denial.

My brother, on the other hand, denies that anything is wrong with him, although its been clear for many years that he is affected. He's 47, can't work, but refuses to try for a disability pension because he would have to be tested.

I went for the test at 47 and was quite shocked to discover I was positive, since I had no symptoms. I'm 51 now and still have no symptoms, but I am very apprehensive.

I don't think you should expect your siblings to take the test at the same time. You have different personalities and are in different circumstances. You may be able to cope with bad news better than they can - or vice versa. I definitely think 18 is way too young to take this kind of test, but 23 may be old enough, especially if you are thinking of getting married.

Good luck,

C.

I'm 23, I tested positive in May. I wanted to be tested, not knowing the status of my mother, she's 50. My grandfather died in 2002 with Huntington's disease. I've always felt that my mother was positive, and she's made some very irrational choices lately, that I saw partly as the disease. I don't speak to my mother, and I have not told any of my mother's side of my family about my positive test. This disease has driven my family apart, I needed to move on with MY life.
It is not easy to live with. I've found support in my friends and co-workers (we work in a SNF, with an HD unit, so everyone is well educated in the disease).
It's tough to imagine my future. I find it very hard to imagine entering into any kind of relationship, because I don't want to become a burden on anyone. I would hate myself if I ever got pregnant. And, its hard to think that in 30 years when I pay off my student loans, I won't be able to enjoy it.
However, I am glad I was tested. I am always doing research to find out what I could do better in my life; diet, exercise, vitimins, budgeting. And, I am running a fundraiser to raise money for research to find a cure.
Personally, I'd rather know, and be pro-active, than always wonder if I carried the gene.