Is a neurological disorder in which the major arteries of the brain progressively narrow and disappear over time. Nature tries to compensate for the impaired circulation by forming compensatory vessels deep in the brain. Japanese neurosurgeons J. Takeuchi and K. Shimizu, who first described the disease in 1957, named it Moyamoya which means small clouds or puff of smoke in Japanese describing this compensatory vessel formation seen typically at the base of the skull, deep in the brain.
In Nippon, around three in every 100,000 inhabitants suffer from Moyamoya. These include a remarkable number of five-year-old children and adults around forty years of age. In Europe only one tenth of the number of patients have been documented, although recent to-date epidemiological surveys are unfortunately lacking. This is attributable to the fact that Moyamoya is still largely unknown in the Western world. It still remains unappreciated and un- or misdiagnosed. The consequence of this lack of awareness therefore results in lost time during which period those affected suffer from repeated strokes leading to severe neurological (sensorimotor, speech, visual deficits, mental retardation) deficits, progressive physical disabilities and at times even death.
Are you keen to understand and learn more about Moyamoya? Would you like to share your experiences and knowledge with other children and families? Then visit the Moyamoya Contact and Support Group. We would like to welcome you to our forum.
Aylin describes in a short essay how she felt when she became ill with Moyamoya disease at the age of eight. Now she can smile again and has grown into a healthy teenager. (German)