over the course of what seems to be several life times, a stress reliever has been my occasional rants about the lack of HD education at the local primary care and medical specialty levels.
Ms. America just finished up a round with a speech language pathologist at the local MedStar facility to address dysphagia issues. During the sessions we took the opportunity to educate yet another medical professional about HD. We dropped a copy of the HDSA's The Physician's Guide and the Speech-Language and Swallowing Difficulties pamphlet after first session. Her reaction was- "why isn't this information available in our reference library?" Good question !!!!!
Or, why hasn't HDSA, as the
premier organization and the
world's leader dedicated to improving the lives of everyone affected by Huntington's disease, reached down to the local level to educate the medical professionals we rely on to help take care of HD community. Doesn't seem too complicated- digitize The Guide and similar educational materials, work with the biggies such as MedStar to pump the data down to their hospitals, emergency care facilities and doctor offices.
from the south of Maryland,
Fred Lothrop