Huntington's Disease Awareness - Why It Matters

Over the last couple of years, May has become a very important month to me. It is the month that has been designated as Huntington's Disease Awareness month. The goal is to raise awareness of the disease and how it affects not only the person with the diagnosis but also the family and friends around them. Because awareness of the disease matters.

This is something that is very close to my heart and the hearts of many of my family members because we are that group that is living with Huntington's Disease as a day - to - day reality of our lives. It may not be something that has an obvious impact on what I do every day, but it is there, constantly in the background of my thoughts. It is the reality of being in love with someone who carries around a positive diagnosis of Huntington's Disease.

One thing that makes all of this hard is the lack of knowledge that so many people have of Huntington's Disease. As I have always said, I know that better than anybody because I was one of them until Robert walked in to my life almost 11 years ago. When he first told me about it, I had no clue what it was. I had never heard of it before. So, I get the blank stares. I was one of them. But we need to change that. We need to raise awareness of this disease so that others know about it; so that others are aware of it and what it means. Raising awareness and knowledge about HD is important to help gain understanding of what the people or going through.

My knowledge of HD has changed how I view a lot of things around me. For one, when I see that person who looks like they are stumbling around like they are drunk, I wonder if that is really the case. Many people with HD appear to be drunk without a drop of alcohol in them. Prior to 1993, it was much more difficult to test for HD and many people were often misdiagnosed with other issues. The limited amount of knowledge about the disease and difficult testing and diagnosis of the HD gene. So, many people were walking around without the knowledge of HD. Understanding how the disease can affect a person matters.

Plus, even now, when we know so much about it, there is still a lot of the unknown.  It is hard to receive proper treatment for the symptoms a person faces. It is very hard to find a doctor that specializes or has adequate knowledge on how to treat an HD patient. In a previous blog, I talked about how Robert was given a medication to treat symptoms of HD when it wasn't even HD. If this first neurologist that he went to had more knowledge of HD, she might have understood that what he was experiencing had nothing to do with HD. Luckily we have been able to find a more experience neurologist in our area through recommendations of people in our support group. But, not everybody is as fortunate to live in an area that has a truly knowledge doctor. Raising awareness for doctors and teaching them about HD so they can adequately treat patients matters.

So, I hope that you will take a moment to read What is Huntington's Disease or visit The Huntington's Disease Society of America website and learn a little bit more about Huntington's Disease. To find a cure, we have to educate the world so they can understand. To help friends understand what Robert's family is going through, they have to be educate.  May is Huntington's Disease Awareness month and I want to make everyone aware of why this matters - not only to me and Robert but to the nearly 30,000 in the United States that have been given an HD diagnosis and their families as well. The impact of this disease is felt on so many more than just that those 30,000 that have been diagnosed.