Today I went to work for a couple meetings, then took off for a 2 hour "Grand Rounds" session in nearby Louisville put on the UMDF - United Mitochondrial Foundation. The purpose of such sessions is for education to come to the those affected on a more regional basis since not everyone is close to a center of speciality. Speaking first was the Executive Director of UMDF, Charles Mohan, whose daughter was lost to a Mito diagnosis. Then the renown Dr. Cohen of the Cleveland Clinic spoke. It is his partner we've seen at the Clinic ourselves.
What were the takeaways? Aside from getting a biology refresh on how our bodies produce energy, best practices for "treating" the diagnosis were discussed. There is no cure, no 2 mito patients seem the same and the supplements often prescribed often only make a difference in a minority of cases. So avoidance of triggers were covered. "Stresses" on mito patients that exacerbate weakness and possible regression were covered include sleep disruption, heat, sickness and starvation. There were other parents there who told stories of sleep problems to which the doctor said sometimes it's as simple as the child needing to eat during the night. Good to know! Dr. Cohen recommends not only adequate hydration for Mito patients, but over hydration. He cited up to 2 liters a day of water for an adult.
In the research area a lot of time was spent on instructing us on how to lobby government officials to get a bigger piece of the NIH budget spent on Mito research and how genetic testing is improving all the time, but until then, without more commonalities in diagnoses, the chance at a cures needs more time. I didn't realize the importance of building awareness of Mito before the session. Many people go undiagnosed. And everyone's mitochondria lose steam as we age. Definitely glad I went!
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