Yes, there are several support groups and organizations that provide resources and connect patients and families, such as:

• The Moyamoya Foundation
• The Brain Aneurysm Foundation
• Various online forums and local support groups

Families can support their loved one by:

• Staying informed about the disease
• Attending medical appointments
• Offering emotional support
• Assisting with medication management and daily activities
• Connecting with support groups for additional resources and advice

Recovery from surgery can be different from patient to patient.  Children tend to take longer to have their blood flow reestablished because they are often only able to receive an indirect bypass, however adults, because they are bigger, can usually be offered a direct bypass.  The direct pathway does heal quickly, however the indirect method can take some months for that blood flow to be restored.

Diagnosis typically involves:

• MRI (Magnetic Resonance Imaging)
• MRA (Magnetic Resonance Angiography)
• CT Scan (Computed Tomography)
• Cerebral Angiography
• SPECT Scan (Single Photon Emission Computed Tomography)

Moyamoya Disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain, leading to the development of tiny, fragile blood vessels that can rupture, causing strokes or bleeding.

Yes, with appropriate medical management and accommodations, children with Moyamoya Disease can attend school. It is essential to inform the school about the condition and any specific needs or precautions.

In case of an emergency, such as a stroke or seizure, call emergency services immediately (000 in Australia) and provide clear information about the patient’s Moyamoya diagnosis.

The prognosis varies based on the severity of the disease and the timeliness of treatment. Early diagnosis and intervention can significantly improve outcomes and reduce the risk of recurrent strokes.

Treatment may include:

• Medications to manage symptoms (e.g., blood thinners, anti-seizure drugs)
• Surgical procedures like:
  • Direct bypass (connecting a scalp artery to a brain artery)
  • Indirect bypass (encouraging new blood vessels to grow)
  • Encephaloduroarteriosynangiosis (EDAS) (attaching an artery to the surface of the brain)

Symptoms can include:

• Transient ischemic attacks (TIAs) or “mini-strokes”
• Strokes
• Headaches
• Seizures
• Weakness or numbness, typically on one side of the body
• Vision problems
• Cognitive and developmental delays in children

Patients are advised to:

• Avoid smoking and excessive alcohol consumption
• Follow a healthy diet
• Engage in regular, moderate exercise
• Manage stress effectively
• Regularly monitor blood pressure