Hi, my name is Anthony Stoecker and I first heard about Rare Patient Voice when I was at a Huntington’s disease conference. And, um, I signed up for it because they, uh, explained that the need on feedback from people with Huntington’s and other issues, um, to develop medicine or, um, other ways to help patients. Um, it’s really easy to participate. They send you an email letting you know that a survey is available and you have the option of participating in it. They’re usually very easy and they don’t take too long to do. Um, they, uh, usually focus on either, um, questions about Huntington’s disease for me. Um, or because of other things that might relate to patients in general. Um, hi, my name is Anthony Stecker and uh, I joined, uh, this because, um, I think it’s important that, uh, the doctors need our feedback about the disease, which for me as Huntington’s and, uh, they are often asking specifically about that disease or sometimes they’re asking just in general about, um, health or, um, what we would do with our doctors.
I have Huntington’s disease and I found out, um, by taking, um, the genetic testing, um. My mother had the disease, my grand, her mother, had it also. Um, my brother had it. And all three of them have passed away. Um, I wanted the testing because for me knowledge is power. Um, if I know I can plan my life accordingly. Um, and that’s what I do. Um, at this point I don’t have a lot of pain. Um, but I am on medications to stop some of the shaking that I would have. Um, and uh, my leg, uh, tremors. So you can’t really tell right now that I even have the disease. Um, although I do have the disability sticker now. So, um, I have, you know, just come to terms with the fact that this is how, um, my life is. And that the disease will progress.
Sharing your feelings on Rare Patient Voice, um, is really, um, different levels of um, giving. Sometimes they’re just asking you to complete a survey. And sometimes they’re asking for more details. Um, I think you would have the ability to address it at your comfort level. And sometimes, you know, they give you the option of um, you know, just keeping private what, um, you want to. Um, I was diagnosed with Huntington’s disease on by having the, um, genetic testing. My mother and brother, I’m already had the disease as well as, uh, my mother’s mother. Um, so, um, it did pass generationally on. It was a pretty depressing, um, thing to find out for sure that you have at. Um, and for me I didn’t really have, um, very many symptoms, um, at that time. So I guess I knew, um, that it was a possibility that I could get this.
So, um, it was just, um, finding out for sure. Um, I uh, was recommended, um, to a specialist neurologist who, um, you know, her focus is people with Huntington’s disease. And she’s been my doctor for many years now. Um, I eventually found out about the Huntington’s Society and the support groups that they offer. Um, and, um, I guess for me, I don’t really feel necessary that I want a support group at this time in my life. Um, but I did go to the conference, um, so that I could learn more, you know, about the disease. Recording the six videos was pretty easy for me. Um, it was just a matter of drawing on my own experiences and it took less than a half an hour for me to complete all six. I definitely would recommend it to you. And joining, uh, the Rare Patient Voice.
