Feeling All Alone in the HD World

Currently, there are about 30,000 people that have tested positive for Huntington’s Disease in the United States. For a country that has nearly 319 million people, that translates into .00009% of the population. A very small number when you think about it. It is so easy to feel like you are the only family out there living with this diagnosis. It can certainly make you feel all alone.

However, estimates are that there are well over 200,000 people in this world that are at risk of having the disease or are currently unaware they are living with the disease.  That is more than the population of 15 individual states and more than the population of North Dakota, Vermont, Washington DC and Wyoming combined. That number does not include the number of family members that do not have the gene but are affected by this disease in another family member. So, you are not alone, even though it does sometimes feel like you are.

I know I was personally amazed when I found out people I know that were in some way affected by Huntington’s Disease. Given the fact that I had never heard of it prior to my husband, I was quite surprised to learn of how many people affected by this disease are out there. Learning of the others out there going through the exact same things that we have has made it a lot easier to deal with. It has also been such a great help to be able to discuss day to day trials of living with HD with people that really know what you are talking about. People that are dealing with the exact same thing or have been there and done that are a wonderful asset in helping cope with the many issues that can arise from HD.

Where is the best place to find that support, you ask? A support group! Getting involved in our local support group was one of the best things that we have done when it comes to dealing with Huntington’s Disease. It gives us the opportunity to be with others who truly know and understand what it is like to live with Huntington’s Disease as a part of your everyday life. Our support group meets once a month. While we cannot make every meeting because of Robert’s work schedule, we do go to the meetings when his schedule permits. It is always a blessing to be with others dealing with the same things.

How do you find a local support group? Visit the HDSA Local Resources page of the Huntington’s Disease Society of America website. This page has resources for all types of things from Support groups to Therapists and even In-Home Care resources. Here you can choose what you want to find and enter you zip code. It will find the nearest ones to you.

You may think that you don’t need to get involved in the group because you no longer have a family member that has HD or that person does not live near you. I want you to know that is not the case. We have several people in our group that have lost a loved one to the disease or have a family member living in another state that come to our group. We even have friends of people that have been diagnosed with Huntington’s Disease. Each person there has a lot to offer the rest of the group and they also get support from the rest of us as the deal with the many different aspects of having lost a loved one to the disease or being away from that loved one who has it.

So, I strongly encourage you to get involved in a group. It is a great resource as you navigate a world with HD and help eliminate some of that “alone in this world” feeling many can get in world that doesn’t know about Huntington’s Disease.