How UCSF Offers Personalized Care for Patients with Moyamoya Disease

Grace Aguba smiles and takes a selfie in her kitchen.
Grace Aguba, a UCSF patient with moyamoya disease, is feeling much better following surgery to treat her condition.

One morning in May 2024 as she was getting ready to start her day, Grace Aguba noticed a strange numbness on a small part of her left cheek as well as the tip of her tongue and couple of her fingertips. 

Hoping that the spell would pass on its own, she decided to lay down. When she texted her husband about it, he insisted that, for good measure, they should seek medical attention. The emergency department at the hospital near her home in Siusun City discharged her the following morning after an overnight observation since her symptoms were consistent with a transient ischemic attack.

But Aguba kept having similar episodes nearly every week throughout the summer.

A local neurologist was concerned that she could have moyamoya disease, a rare cerebrovascular condition that can cause strokes due to the progressive narrowing of the the blood vessels within the brain, and referred her to UCSF neurosurgeon Luis Savastano, MD, PhD.

Since moyamoya disease reduces the blood flow to the brain, neurosurgeons like Savastano use two main approaches to try and prevent future strokes. The first, called a direct bypass, connects an artery from the scalp to an artery on the surface of the brain, immediately restoring blood flow to the brain. Additionally, surgeons may also perform an indirect bypass, in which they place a piece of vascularized tissue over the surface of the brain to promote the grow of new blood vessels.

After an angiogram confirmed that she had moyamoya disease, Savastano recommended that Aguba get surgery to help alleviate her symptoms.

“Moyamoya disease is a condition that cannot be cured, but it can be managed over time,” Savastano said in a recent video highlighting the different treatments available to patients. UCSF is a high-performing hospital for stroke care, and a team of experts across neurosurgery, neurology, and radiology work together to coordinate care for patients with moyamoya disease like Aguba.

 Since her surgery in December of 2024, she has been doing much better, having learned over the last few years how to better navigate the challenges that can come with this progressive condition.

“It took me about a year to understand and accept that I have to adapt to living with it,” Aguba said. “I’m now able to recognize when I feel tired or mentally fatigued.”

These are moments when she’s realized it’s important to step back and allow herself time to rest.

Aguba will still need another surgery for the left side of her brain, but as she reflects on how far she’s come with moyamoya disease so far, she’s grateful for the support she’s received from her family. 

And she’s looking forward to watching her daughter graduate high school next month and start college in the fall.