May is Huntington’s Disease Awareness month. This month is significant to our family. Last summer, my wife Jan was diagnosed with HD. Later, we found out that both of our children and one of Jan’s sisters also have it.
HD is a genetic, fatal neurological disease for which there is no cure. Yet. If you want to find out more about it you can go to https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/?
As you can probably guess, the diagnosis of a disease such as this has changed our lives. After all, since there is no cure, it will end in death. There is currently no treatment for the disease, only for the symptoms. As the disease progresses, there will be issues with memory and processing, problems with balance and movement and issues with speech and swallowing. Death is often caused by pneumonia, heart failure, choking or other complications. Depending on when the symptoms appear, the course can run from ten to twenty five years.
There are varying degrees of HD. How severe the disease will be depends on the number of “repeats” in a particular gene. The lower the number, the shorter and less severe. The threshold number is 40. That is Jan’s number. The folks with the higher numbers usually show symptoms between the ages of 30 and 50.
We are in a season of trying to settle into a new normal, with only a limited idea of what the future will look like. We know that we have to trust that our loving Father has us in his hands, and that he will be with us through whatever may come. There will be days ahead when Jan will not be able to do many of the things she once did, and there will be times of frustration and wondering.
Our children also face the unknown, but there is encouraging news for them. A number of clinical trials are showing promise, and there is a possibility of a future treatment that could effectively cure HD. We hope and pray that medical science is able to accomplish this soon.
We would appreciated your thoughts and prayers for us as we travel down this back road together.
My love and my prayers to both of you ❤️🙏
Thank you. We both appreciate it.
We’re so sorry to hear this news. We have lost a good friend to Huntington’s and we watched the progression with her over several years . It is such a cruel disease and we pray for all of you and for your family. We send you all our love. Aunt Ethel & Uncle Dave
Thank you. We both appreciate it.