Note: Earlier this month, California officially recognized May 6th as Moyamoya Disease Awareness Day (http://scopeblog.stanford.edu/2017/05/04/may-6-officially-recognized-as-moyamoya-disease-awareness-day-in-california/)
This past Saturday was World Moyamoya Day — but only to those within the tight-knit Moyamoya community and their friends/family. There has been an effort to get the World Health Organization (WHO) to recognize May 6th as “World Moyamoya Day”, yet the WHO’s decision that the disease is not “major” enough to receive recognition in this form presents a roadblock. Because of this, there is a petition, one spearheaded by Tara Macinnes, to persuade the WHO (World Health Organization) to formally set May 6th as “World Moyamoya Day”. The link to the petition is under the “Important Links/Other Sites” page of this website, but I have copied it below as well:
Getting as many signatures as possible — telling friends, family, or peers about this petition — is absolutely crucial to the spread of awareness of Moyamoya. There are around 5,000 signatures needed for the petition to be legitimized. I write often about the need for increased awareness about Moyamoya, yet do not regularly explain why it is so necessary. I was misdiagnosed almost a dozen times by otherwise qualified doctors and neurologists before being succesfully treated simply because of the “rarity” of Moyamoya cases; however, a trained or aware doctor could have observed and picked up on the rather textbook signs of Moyamoya that I exhibited in MRI’s. The issue is not necessarily with the doctors themselves — who are representative of the general medical community and was as the public’s knowledge of Moyamoya — but with the fact that almost nobody a) expects to see cases of Moyamoya or even b) knows what it is. Fortunately, I was able to be seen by one of the leading experts in Moyamoya, Dr. Lori Jordan (see my interview with her a few blogs down) and was properly diagnosed.
However, the sad reality is that not everyone has been/will be as fortunate as I was; The correct diagnosis of Moyamoya disease is not difficult to make when a doctor is informed and aware; with proper resources such as an MRI or an angiogram, the signs of Moyamoya in the brain’s blood vessels can be easily distinguishable.
All current statistics indicate that close to 1 in every 2,000,000 people in the world have Moyamoya — hence its status as a “rare disease”. However, factors such as misdiagnoses have led researchers at the Stanford Moyamoya Center to estimate that the actual number is closer to 1 in 200,000. The astounding difference in the two estimates of Moyamoya cases per population concentration is incredibly worrying, especially given the progressive nature of Moyamoya. The longer the disease goes untreated, the more one is vulnerable to repeated strokes which could lead to increasing cognitive and physical damage or death.
This is why raising awareness for Moyamoya is so important; this is why we need to convince the WHO to recognize May 6th as World Moyamoya Day. It is tragic how an unknown number of people die every year because of stroke or hemorrhage due to an undiagnosed or belatedly diagnosed case of Moyamoya.
Another reason that signing this petition — taking 5 minutes of your day (maximum) in order to further a life-saving cause — is necessary is the funding for research. Just as a WHO-recognized awareness day would raise awareness for the disease, it will attract attention towards the research being done at leading clinics around the world. There is currently no cure or prevention method for Moyamoya, and there only exist surgeries to aid in improving cerebral vascularization. The problem is, however, the lack of access that many people have to get the MRI’s and angiograms, not to mention surgeries, in order to beat back Moyamoya. Drawing more attention to the severity and relevance of Moyamoya disease everywhere around the globe could potentially fuel research to find a cure.