Why should you get involved with other people who have Huntington’s Disease?
In 1981, Marjorie Guthrie travelled to North Carolina for the first meeting of North Carolina HD families ever held. It was her strong belief that life could be better for HD patients through knowledge, connection with other HD families, and better medical care. In the spring of 1981, she brought Nancy Wexler, Ira Shoulson, and George Paulson to North Carolina to support that message.
As a result of Marjorie’s trip, a group of families met and became the first members of the North Carolina HD community. Over the years, these families shared the joys and losses that typify life in general. The birth of children and grandchildren, graduations, marriages, divorce, job changes, declining health and loss of loved ones were shared as time passed.
In 1997, a renewed effort to bring families together began, which resulted in the creation of the North Carolina Chapter of the Huntington’s Disease Society of America. Support groups sprang up in Raleigh and Charlotte, and new members were added to the NC HD family. Getting together at fundraising events or board meetings, people shared their successes and challenges, and a common desire to improve the life of people affected by Huntington’s Disease. The North Carolina HD community evolved into an action oriented, positive and community centered group of people.
What is the down side? Getting involved with other HD families may shed light on a future that you fear for yourself or your family. The fear aroused by seeing a person at a more advanced stage of disease or talking about your life with another person at risk can be daunting. You may wonder if there is a benefit to spending your precious time getting involved with other HD families.
But many find that being part of the HD community is like being part of a larger, stronger family, a group of people who understand your feelings and struggles. The bad thing about Huntington’s Disease is that it is a rare illness; the good thing about HD is that when you find someone who understands, a bond is created that can be very important and sustaining. You will never know unless you come see for yourself if it is for you.
You would be a welcome addition to the NC HD community!