For me, and for many other Phd’s (People with Huntington’s Disease), the recent news of upcoming gene silencing trials has brought more questions and quite a bit of concern. For the first time, I am without a clinical trial! All of the ones in which I participated are over, and there are no new ones to take their place! I really did enjoy participating in the trials that I was able to do, and the folks who were running them really did make me feel like “queen for a day!” When the gene silencing trials finally start, it will be in Canada and Europe, not the good old USA!
I really enjoy reading Marsha Miller’s
advice on the HDLF forum, where she was asked a similar question, “What do we do now?” In response to that
question, Marsha wrote:
In short, this just
might be the beginning of the end but we are not there yet and clinical trials
take years. We need to make sure that we in the HD community stay as healthy as
possible, eating well, exercising our bodies and brains, and avoiding stress so
that we can be ready for the treatments in the works. This applies to those at
risk and HD patients but also to caregivers because we are going to need to be
at our best to advocate.
And for those who at risk and who have tested positive, don't let HD rob you of your hope and joy in life. If you allow the prospect of getting the disease in the future to stop you from achieving your dreams and being happy now, think of how sorry you will be if the future brings the cure instead.
And for those who at risk and who have tested positive, don't let HD rob you of your hope and joy in life. If you allow the prospect of getting the disease in the future to stop you from achieving your dreams and being happy now, think of how sorry you will be if the future brings the cure instead.
As always, Marsha's advice is so well-written, and full of positive energy! So, I'll try to follow her suggestions, keeping as upbeat as possible. And waiting for the next step...
