Learning About Other Diseases Improves HD Advocacy
As a Huntington’s disease (HD) community advocate, I am always trying to listen and learn from anyone who may help the cause. This means listening to people outside the HD community, as well as those who are part of it.
Earlier this year, I was connected to a young adult who was impacted by early-onset familial Alzheimer’s disease (EOFAD). At the time, I hadn’t heard of EOFAD. I just assumed Alzheimer’s disease only affected the elderly, and that there wasn’t any type of genetic connection. So I was a bit mind-blown to learn that what a young person affected by EOFAD may experience was almost identical to what a young person affected by HD might experience.
Last month, I posted a few questions about HD on Twitter, and I received a response from a young person who is in the familial amyotrophic lateral sclerosis (FALS) community. I had previously read a little bit about FALS, but I didn’t know much. Again, I found similarities to HD.
This month, I organized a group phone call with two people from the FALS community, one from EOFAD, and two from the HD community, including me. It was inspiring to meet others outside the HD community who deal with similar issues, barriers, and obstacles to their health, and I was encouraged by what they were doing about it.
Although the three conditions don’t have identical symptoms, we identified a few common issues that we plan to dig into. They include clear guidance of biomarker endpoints for clinical trials, genetic testing and counseling experiences, insurance barriers, employment discrimination, the affordability of preimplantation genetic testing on embryos created via in vitro fertilization, clinical trial availability for pre-symptomatic people, and the lack of effective treatments. These aren’t issues that can be addressed all at once, but during our talk we agreed that we could do more working together than we could in our own silos.
I’m looking forward to the next call with this group, and hope to identify a few other conditions that we may have in common, and areas where we could advocate together. We have to learn more from one another and work together to accomplish the many things that we as rare disease communities face.
These are unique and exciting times for people who are at risk for neurodegenerative disorders, and I hope change is possible through advocacy.
I hope anyone affected by HD, FALS, or EOFAD will reach out to me, and that anyone from the HD community will join the newly formed conversation. I will continue to write about this in future columns. Please share in the comments below.
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