Published by
Stanford Medicine

Neuroscience, Stanford News, Stroke, Surgery, Videos

Raising awareness of moyamoya disease

Raising awareness of moyamoya disease

Today isn’t just May 6, it’s also World Moyamoya Day. Well, not officially – but one patient is trying to change that.

Moyamoya, a rare cerebrovascular disease is often overlooked by neurologists, and its symptoms confused with those of chronic migraines. Tara MacInnes spent most of her childhood suffering from excruciatingly painful headaches and bouts of numbness and tingling in her hands, face and legs. Like many others with moyamoya disease, these episodes were overlooked by her pediatric neurologists. By age 16, when an especially bad episode led to an MRI and eventually a correct diagnosis, both sides of her brain had already suffered damage from strokes.

But MacInnes was lucky: She happened to live close to Stanford, where Gary Steinberg, MD, PhD, one of the world’s leading experts on moyamoya treatment, practiced. And like many patients, what MacInnes needed was more than just surgery – she needed a sense of belonging and the ability to interact with others who had gone through a similar experience.

Shortly after her surgery here MacInnes began volunteering at the Stanford Moyamoya Center, talking with patients and their families. The more she met with people, the quicker she realized it wasn’t just the general public that didn’t know much about the disease, but that many medical professionals had never heard of it. Now, 10 years after her successful surgery, MacInnes has become a devoted advocate and is determined to raise awareness about the disease; you can sign her petition to help spread the word and make World Moyamoya Day official.

Previously: How patients use social media to foster support systems, connect with physicians

One Response to “ Raising awareness of moyamoya disease ”

  1. thomas collins Says:

    A wonderful idea. Although an extremely rare disease…it’s very significant to those impacted by it

Comment


Please read our comments policy before posting

Stanford Medicine Resources: