I'm saddened by the loss of another young life to JHD. This young lady is near the age of my daughter and was diagnosed just a few years prior. I'm sure I'm not alone in all the wondering about the things we do, or don't do, and what might have an effect on the length of time we have with our loved ones. I like to think that maybe some of my proactive moves are helping my daughter and son to hold on longer, and possibly be around for a cure someday.
I attended the HDSA National Convention in June this year and it was amazing. One of the things that was the point of discussion along the way there was about the use of feeding tubes for HD patients to maintain weight. I was sad to hear that most the comments were about loved ones who only live about 3-6 months after the feeding tube was in place. To me, this meant maybe they are being thought of more as a last resort weapon to hold onto life rather than a tool to be used along the way. It was a very difficult decision to have the tube surgery for my daughter, but she has been able to maintain weight and, therefore, keep up her strength quite well for the past year and a half now. I would just suggest that perhaps others could look at this as an option a little earlier than when we see the point of emergency intervention. Of course, we all need to make the best decisions we can for our loved ones, whatever the circumstances, and there is of course no right or wrong answer for any of this.
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