SHARDAI COUSINO: I don’t know any different.
I don’t know what it’s like to not be in pain. So, I mean, I don’t know. It doesn’t
really bother me. SHARDAI COUSINO: My name is Shardai Cousino.
I am 24 years old and I am enrolled in college as a part-time student. I was born with Epidermolysis
Bullosa or EB for short. It is a rare genetic skin disorder where my DNA is mutated and
it doesn’t produce the proteins that are responsible for holding the skin layers together. SHARDAI COUSINO: Any bumps or repeated friction
causes it to blister or come off. CAROL COUSINO: Shardai was diagnosed at birth.
The nursing staff, the doctor, they just all crowded around her and I was like, ‘What’s
wrong?’ And I knew she was alive because she was crying but she didn’t have any skin
on her legs and from her knees down, no skin. Few days later they, they found out that
it was Epidermolysis Bullosa. CAROL COUSINO: There is no cure. It’s hereditary.
The only thing that we can do is pain management and wound care management. SHARDAI COUSINO: This is Mepilex Transfer
with vaseline, coconut oil and meadow honey. And this is Mepilex AG or silver, with vaseline
and coconut oil. We usually interchange them. That stuff that you see coming through there
is a mixture of the Xeroform and of honey coming through. Better than dried blood or
seepage which happens. CAROL COUSINO: With EB, the biggest risk is
infection and the other one is malnutrition because their body tends to burn more calories
because it is constantly trying to heal. SHARDAI COUSINO: People with my specific type,
which is Junctional, our teeth decay easier, we lose our hair, we lose our fingernails. SHARDAI COUSINO: The reason why I have lost
a lot of hair is from blisters and scarring. CAROL COUSINO: Shardai has always been able
to adapt to things. CAROL COUSINO: When she wanted to do something,
she did it. I wasn’t going to be one of those parents to hold her back. So if she
wanted to climb a tree, if she wanted to jump on a trampoline, if she wanted to ride a horse;
whatever she wanted to do, I’ll let her do it. ANGELINA COUSINO: Has skin like tissue paper
and a wet tissue paper. If it gets wet, it can, you know, rub off and that can literally
happen to her. So you have to be very careful with the things that you do, or the things
that she does, she has to be careful with. Despite all that, she still does whatever the
hell she wants. And sometimes I am like, ‘Are you sure you want to do that?’ She is like,
‘I got this.’ So she is, she is awesome even though she gets on my nerves. SHARDAI COUSINO: Living with this condition
has taught me to, I try to say to people if I didn’t have EB; I would have, I would
have gotten into a lot of fights in school. Like, I can’t control my mouth. I didn’t
get picked on though or bullied. Because I just, I wouldn’t tolerate if someone said
something and it was like, ‘What did you just say? For real? Are we really doing this
right now?’ CAROL COUSINO: Shardai has always had an outgoing
personality. She made friends easy and quickly. JONATHAN LOGAN: I met Shardai at school. I
walked up and I said, ‘Whoa! Hi,’ kind of. Like I asked her, ‘So, why are you all, like, look like a mummy?’ And she told me about EB and all that stuff. CAROL COUSINO: She never let her disorder
define her. She goes to the college; she goes out with friends; she did stand-up comedy.
One of her jokes was the worst thing about being in a wheelchair is being at butt level with people in the Walmart line. So she is a pretty awesome person. SHARDAI COUSINO: So many people: “Do you have the Michael Jackson disease?” I am like, “No, no I don’t.” They ask, you know, “Do you have Vitiligo?” like, “No, no I don’t”. This is an entirely different thing. SHARDAI COUSINO: When I was a kid, people’s
reaction to EB was a lot different. Maybe it was different because I cared more and
now I don’t.