Moyamoya Disease

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May 6, 2021

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World Moyamoya Day, May 6

Today is the 9th World Moyamoya Day! We are still trying to get it recognized by WHO as a Day. The Mighty doesn't even have a place for us, except to lump those of us who've strokes in with them.

What is Moyamoya Disease? It's a rare, progressive cerebral vascular disease that for some unknown reason causes the smooth lining of our cerebral arteries to inflame, causing blockage of blood flow. Due to this blockage our bodies form collateral vessels that attempt to provide blood to the area without but are extremely fragile and tend burst causing hemorrhagic stroke's. There is no cure for Moyamoya, the only treatment is to try and slow the progression down by doing revascularization surgery of the area devoid of blood flow. #MoyamoyaWarrior

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June 30, 2020

Brain surgery date confirmed.

#MoyamoyaDisease
My brain surgery is confirmed. It’s July 17th (July 16th pre-op) at John Hopkins all children’s hospital. At least both my parents can visit me. However, they can’t visit me together because of the Hospitals COVID policy.

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bellafish1717

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@bellafish1717

June 25, 2020

1st brain surgery

I’m having my first brain surgery because of moyamoya disease. I’ve had 2 strokes (as a teenager!) which is still a shock due to my age. I’m a bit nervous, the date is coming up fast. It’s going to be around mid-July. I will have to have a 2nd one. I will have to do my 3rd covid test (which is just annoying. I’ve had one to be admitted to the hospital, 2nd one for my angiograms, and now for the first brain surgery). I’m nervous and the cost of the surgery is astronomical and my parents don’t just have a spare 125,000*2 laying around. I know I shouldn’t be stressed about this since it is a critical surgery, but I just can’t help it. I know I just need to lay it a God’s feet.

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bellafish1717

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@bellafish1717

June 25, 2020

A bit nervous before my first brain surgery

I’m at big nervous before doing my 3rd COVID test before my 1st #MoyamoyaDisease surgery. Which is my 1st surgery ever. I will have to do a 2nd one. The cost is astronomical. I’ve had 2 strokes, one that showed no symptoms. I have 2 covid tests as of now, a spinal tap, 4-5 mri’s, 30+ vials of blood, ekg, x-ray, heart ultrasound, kidney ultrasound, blatter ultrasound and then some. They could not figure it out. Does anyone have experience with getting moyamoya as a child or teenager?