Not Talking About It Is Not The Answer

At a recent support group meeting, we were joined be a young girl. She is in her mid to late 20's and had recently been told she was gene positive for Huntington's Disease. She had lost her mother recently to the disease and her brother was in the advance stages of the disease. Even though she was not experiencing any of the symptoms, she made the difficult choice to determine if she had the disease. So, when she came here for the first time, she was dealing with a lot.

At the end of the meeting, she stayed to talk and actually asked Robert and I several questions. We did our best to answer them. Then, there was another lady who joined in the conversation. She was an older lady who was married to a gentleman who was in what would be classified as mid-stage. He showed obvious signs of chorea and was having trouble with coordination and some cognitive issues as well. The only thing that she really said was that the young lady should not talk about it and never tell anybody that she had the disease. It should never be discussed.

That bothered me. While I do understand that you might not want to necessarily share the information with your place of employment or your life insurance company, you need to talk about it. Your friends and family need to know about it. Others that have no experience with this disease and have never heard about it need to know about this disease. It has to be talked about.

One of the problems with Huntington's Disease in years past is that it was never really talked about. It was always that mom, dad, grandpa or whatever family member it was, was just sick. As a result they were often thought of as drunk or misdiagnosed as schizophrenic or another mental disorder. They might be told they had any of a number of disease but the one that the person really had. Because nobody was talking about. Because nobody understood the disease or knew that it was really what Aunt Sue was suffering from. So, not talking about it is not the answer.

To raise awareness, it has to be talked about. People who know about the disease because of a family member, a friend or even the person themselves has it needs to talk about it. In situations like Robert, this young lady and many others, it needs to be shown that even though the disease will kill you eventually, it does not mean that life has to end. Many people with HD have had wonderful lives even after their diagnosis. Granted, some of them got diagnosed before they began experience symptoms and not everybody has that luxury. But I have had the opportunity to see people that are in the mid stages of the disease and even some in the later stages of the disease. They all have been able to lead lives they could be proud of while living with the disease.

What I am saying is this: We have to talk about the disease. To raise awareness of this disease and the need to find a cure we need to talk about it. While you may not want to tell the world that you personally have it, you can still work to educate people so that they are not uninformed.

So, if you know about it, if you have experience with it in any way shape of form, you need to tell others about it. Educating others will raise awareness. Educating others will help to spread the word and give us a better chance of finding somebody that may be able to find the cure to put an end to this dreadful disease that plagues generation after generation after generation.