Rare diseases such as moyamoya typically struggle to get publicity and are seldom rewarded with legislative action recognizing their existence, which is what makes this resolution so significant. The rare cerebrovascular disease, which was identified in the 1960’s and can only be treated with surgery, is still often overlooked by neurologists; in many cases patients remain undiagnosed until they’ve experienced serious cognitive decline from the multiple TIAs and ischemic strokes that are among the disease’s signature symptoms.
The disease affected one young woman, Tara MacInnes, long before she or her parents were given the appropriate diagnosis. MacInnes began to have migraines at age six, and by the time she received a diagnosis at age 16, she’d already had multiple strokes. It’s now been 15 years since her surgery at Stanford (which has the largest moyamoya referral center in the world), and she has spent much of that time advocating for recognition and awareness of the disease.
MacInnes’ story, and her fight to get recognition from the World Health Organization to officially declare May 6 World Moyamoya Day, inspired many at Stanford. A group that works with Gary Steinberg, MD, PhD, who has performed more than 1,400 moyamoya surgeries here, reached out to the hospital’s governmental affairs teams, who then shared MacInnes’ story and the realities of many of those living with moyamoya with Berman.
It didn’t take long for Berman and his colleagues to realize what impact legislative recognition would mean to the moyamoya community. As with any rare disease, an increase in awareness among the public and health-care professionals can help lower the rate of misdiagnosis and lead to more research funding, which can, in turn, lead to better treatment options.
“We’re grateful that California’s leaders recognize the need for moyamoya awareness, and we’re thrilled for our patients, their families, and the moyamoya community at large,” Steinberg told me. “We hope, that as with many other important issues, once again California will be an example for the rest of the world in spreading understanding of this rare disease.”
Previously: Raising awareness of moyamoya disease