On a weekend outing with my son and daughter, I met a lovely woman who told me she had met children with Down syndrome at the Stanford University Hospital Moya Moya Clinic.
I learned that Moya Moya disease has something to do with a bunch of very small blood vessels in the brain that bypass larger blocked artery. It is a rare condition that is slightly more common in children with Down syndrome, but should be considered and ruled out if a child, teen or adult with Down syndrome has symptoms that resemble those of a stroke, even if they are temporary, especially if the individual also has headaches or seizures. The shopkeeper told me that having surgery to bypass the blocked artery works very well for children and adults who have Moya Moya disease and she had met families of children with Down syndrome at Stanford fundraisers who were of course grateful and happy that the surgery was available to successfully treat their sons and daughters.
We spoke for a while about it, and when I returned home I consulted the Stanford Medicine Neuroscience website to learn more about it. They provide an excellent list of symptoms that should alert pediatricians and other medical professionals to the possibility of Moya Moya disease. Reading the history of the disease and learning more about the Stanford Moya Moya clinic was fascinating and reassuring.
They have graphs of the ethnicity and gender of the patients they have treated, showing that the majority of their patients are of Caucasian and Asian descent, with twelve percent other ethnicities. The other graph shows that more than seventy percent are female. I was concerned to read that children with Moya Moya disease often experience temporary weakness in one or both arms or legs when they cry or after strenuous physical activities. Because it is such a rare disease, pediatricians might miss milder symptoms in typically developing children. With the communication and intellectual challenges of our young ones with Down syndrome, and a certain tendency to attribute otherwise unexplained symptoms to DS, it may be more difficult to diagnose early.
Because families often share information on rare conditions that affect other children in their local parent group or internet discussions, it is my hope that we can raise awareness about Moya Moya disease in children with Down syndrome as well as among families of their mainstream peers who show the symptoms for the earliest possible diagnosis and treatment. It should also be considered whenever an individual with Down syndrome gradually loses mental abilities, and especially when a brain hemorrhage occurs in teens or adults or they have 'neurologic symptoms' that can be attributed to one.
Browse at your public library or online retailers for medical books about Moya Moya disease, cerebrovascular diseases and stroke recovery.
Stanford Medicine » Stanford Hospital & Clinics » Clinical Services » Centers of Excellence » Neurosciences » Moyamoya
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