Stanford's annual picnic is a, a huge example of patients getting together and supporting
each other. They feel like they have people that can understand what they're going through.
My daughter, Tara, was diagnosed with Moyamoya disease at age seventeen.
For, literally, my entire life, I remember just this pounding sensation in my head, and
it was excruciatingly painful.
When I was eight, I started telling my parents, my hand funny, or my face felt funny. I'd
feel a numbness in my hands.
We were out to dinner one night, and all of a sudden she dropped the fork and said she
couldn't feel her fingers.
My parents were talking to me, being like,
"Tara, what are you doing?" And my speech was entirely gone.
That lasted for about ten minutes.
We, at that point, thought we really should take her back to the neurologist and have
it looked into.
I'll never forget the phone call when he delivered the news that he believed she had Moyamoya.
He said, "You're very fortunate. There are just a couple of experts in this country,
one of them happens to be at Stanford."
And, I had my first phone call from Dr. Steinberg's office fifteen minutes later.
Moyamoya disease is a condition that affects the arteries at the base of the brain.
In Moyamoya, the arteries become progressively more narrow and then become completely blocked,
so that blood is not delivered to the brain.
As a result of that, the brain tries to revascularize itself, or produce new vessels, and the smaller
arteries in the brain proliferate and enlarge, and they look like a puff of smoke on the
angiogram, and that means Moyamoya in Japanese.
Moyamoya disease is progressive, and patients end up with neurologic deficits
including inability to move their arms or legs, problems with speaking, difficulty with
understanding, or cognition.
I was always a straight A student. But, I was failing test after test after test. I'd
see the grade, and I'd feel like, "What happened?" but we had no idea that it related anything
to Moyamoya disease.
The only treatment is to provide a new blood source to the brain. The method I prefer,
is to take a scalp artery, harvest that artery under the microscope, and then sew that artery
to an artery on the surface of the brain that's not affected by Moyamoya disease.
Dr. Steinberg had a surgery that was different than what most other surgeons offered. He
has a philosophy that you need to do a direct bypass right from the start, because that
offers an immediate improvement in blood flow.
Tara went in early morning to surgery...it was the hardest day of my life.
And, eight hours later, Dr. Steinberg came out and said, "Your daughter behaved beautifully."
and that was enough for us.
Within a couple of years of her surgeries, she started expressing an interest in meeting
patients, and we started going up to Stanford and just sitting with people as they were
going through surgeries.
I also want to start a medical nonprofit organization for Moyamoya disease. I really feel like this
is what my calling in life has been.
When you, actually, get to come back and see them every year and see that, not only are
they growing up, but they're growing up without strokes. And when you see young patients going
on to college, going on to have children themselves, that is incredibly fulfilling to be able to
say that you had a hand in, in helping that happen.