2018 Patients of Moya Moya Disease Meet-up

There were 17 families, 34 patients joining the meetup on December 15, 2018. According to the survey before this reunion, we found that the patients are concerned about pre-operation caring and rehabilitation the most.

As a result, during the speech given by Dr. Guo, he shared the result and talked about age distribution of Moya Moya Disease. He also introduced the ways of operation, and the differences between angiography, computed tomography (CT) and magnetic resonance angiography (MRA).

Some questions asked most frequently included if patients could skip the operation and when they need the operation. Dr. Guo suggested that the best time for operation is upon diagnosis of the disease. Moreover, many patients want to learn about the genetic testing, whether they need to cut off their hair before operation, pre-operation mental building up, arrangement of lives, and how to adapt the condition after operation.

Patients and their families were anxious while hearing key words such as “Moya Moya Disease” and “revascularization surgery” upon diagnosis. As a result, they need the support from different professions, including medical group, pre-operation caring, and mental caring.

Next, the founder of TFRD, Serena Wu C, and the executive director, Ruth Kuan-Ju Chen, explained the meaning of rare diseases and how one disease is announced as rare disease. All the people who attended the reunion learned a lot. The most unforgettable during the meet-up was that a little patient shared the process of his operation and the way physician told him to take care of himself. His positive attitude toward the disease and his optimism touched everyone. At the end of reunion, Ruth encouraged everyone by telling them that whenever and wherever they are, they are not alone while facing the disease, because there is everyone’s power, and we were all looking forward to the next meet-up.

Translator: Newny Chiang (MS), Reviewer: Albert Kuo