Moyamoya Miracles
About
Hi! My name is Lizzie Moyston, and I created Moyamoya Miracles to raise awareness about the often overlooked challenges of moyamoya disease. Although I do not have moyamoya, my mother’s journey with this condition has been a profound inspiration. Witnessing the major impact it has had on her life—how confusing and frightening it can be—has driven me to take action. I believe that sharing survivor stories and spreading knowledge about moyamoya can make a meaningful difference in the lives of others affected by this rare disease. Moyamoya Miracles provides resources such as online communities, forums, opportunities for donations, and connections to organizations that offer support. My hope is that Moyamoya Miracles serves as a valuable resource and source of support for those in need.
What Is Moyamoya?
Moyamoya disease is a rare and serious condition that affects the brain's blood vessels. The main arteries that supply blood to the brain, called carotid arteries, gradually become narrow and blocked. To cope, a network of small, fragile blood vessels forms in the brain, resembling a "puff of smoke," which is what "moyamoya" means in Japanese.
​
This disease often shows its devastating effects in childhood or middle age, causing strokes, severe headaches, seizures, and cognitive issues. For children, the disease can progress alarmingly fast, adding to the worry and heartache for families. Complications include ischemic strokes from reduced blood flow and hemorrhagic strokes from ruptured moyamoya vessels, both of which can be life-threatening.
​
The cause of moyamoya disease is not fully understood, which can be incredibly frustrating and frightening for those affected. It can be linked to genetic factors or occur randomly and is sometimes associated with conditions like Down syndrome or sickle cell disease.
​
Diagnosing moyamoya disease involves complex imaging techniques like MRI, MRA, and cerebral angiography to get a clear picture of blood flow and vessel condition. Although there is no cure, treatment focuses on surgical revascularization to restore blood flow to the brain. This can involve methods that encourage new vessel growth or directly connect scalp vessels to brain arteries. Early diagnosis and treatment are crucial for managing symptoms and reducing the risk of stroke.
​
Living with moyamoya disease is incredibly challenging, but with the right medical care and support, it is possible to manage the condition and maintain hope for the future.
​
To learn more about moyamoya disease, visit the following resources:
- Boston Children's Hospital: Boston Children's Hospital: Moyamoya Disease
- Penn Medicine: Penn Medicine: Moyamoya Disease
- Stanford Medicine: Moyamoya
- What is moyamoya? (Youtube: Boston's Children's Hospital)
- How serious is moyamoya? (Youtube: Boston's Children's Hospital)
- How do we diagnose moyamoya? (Youtube: Boston's Children's Hospital)
- What happens after surgery for moyamoya? (Youtube: Boston's Children's Hospital)
