signed my death warrant. No one is
going to hire me knowing I have this
disease. I have now become a huge
liability, and you are telling me that
I don’t know when I’m going to see a
relapse in remission. I said, how do
people live with this?
Fast forward with my doctor’s help
and my parents, we calculated what
cities I would be in throughout the
world, or how I would get my infu-
sion (my injections) wherever I was
because I can’t travel with all of that
stuff. People would see it, and I had
to keep it a secret. I also didn’t have
medical insurance, which is very
important, but I was an independent
contractor. At the time, one of my
MS drugs was $65,000 a year, and I
paid every bit of it.
As a voice of patient advocacy for
MS and treatment, you share that
you continued modeling to pay for
treatments. In what ways do you
help people affected by the disease
who cannot afford proper care?
I was called to come to his office. It wasn’t his nurse or medical assistant,
it was him, and he sat down, and he looked at me, and I just looked at him.
He put everything thing down, and he said, “I’m really sorry to tell you this,
but everything is coming back that you have multiple sclerosis.” I looked at
him and, I went, ok, not knowing what MS was, the two people that popped
into my mind were Richard Pryor and Annette Funicello. It was January of
1998. I looked at him, and I said, Well, what do I have to take? How long am
I going to be out? Let me call my agent. He interrupted me and said, “Stop!
You have MS and you’re going to have it for the rest of your life.” I sunk
low in the chair, and huge tears formed from my eyes and rolled down my
face. The doctor went on and said, “Well, you can manage it, and there are
disease-modifying drugs that are available, and we’re going to get you on
one.” My thought: He might as well have been speaking a language like Farsi
(laughs). I didn’t hear any of it. I just looked up at him, and I said you’ve just
12 | BSM MAGAZINE | APRIL 2020
This is so important. I know there
are tens of thousands of people that
don’t understand the world of a
model, so when I am speaking, I am
changing the face of MS by being raw
and authentic because I struggle like
every other MS patient. There are a
lot of people out there that are not
doing enough for MS because they
are profiting off their disease, where
it does me no good. We have no cure
for MS. As a patient advocate, I get
up to tell my story and inspire hope,
whether you have MS or not. Who
better to ask for funds than an MS
patient because we need funds for
research. We need to get to a cure.
I know the stats because I live with
it. It is important when I speak at
an MS fundraiser. I do not charge a
speaker’s fee. I also pay for all of my
expenses, which include the team
that travels with me. I buy tables
and fill them when I speak, and I
have friends from all over the world,
so whenever I am in a certain place