[marching band music plays]
>> Shaniya: Our football team is like number
one in the nation, so the band has to be bullet
energy and precise.
I think it's kind of like they're beating
for me.
It makes me feel like I'm normal, like I can
be normal.
Music is life to me, music is life.
My name is Shaniya.
I am 16 years old.
I live in Batesville, Mississippi and I have
sickle cell disease.
>> Nicole: Even if they don't have a chronic
disease, it's hard to be a teenager.
They really have to be on top of taking care
of their sickle cell disease in addition to
being exposed to the regular world and daily
activities of going to school, participating
in a sport.
>> Boy: The first time I actually found out
she had a disease was when we were at a contest
and I saw her get kind of weak and we were
marching off the field and I saw her pass
out.
>> Girl: She's always just pushed herself
and she just works so hard.
>> Nicole: Most of our teens, they don't wanna
be different.
They don't want to have to stop and take breaks
because it makes them look different or feel
different.
It is a chronic disease and it is very vital
to their care that they have a place that
they can go that understands their disease.
St. Jude is one of those places.
>> Dr. James R. Downing: St. Jude Children's
Research Hospital is primarily known as a
place that treats children with cancer, but
really, from our start, we have had a program
to treat children with sickle cell disease.
It was a devastating disease at that time,
but we've made great strides in improving
the outlook for children with sickle cell
disease.
>> Nicole: A sickle cell isn't round like
a healthy red blood cell.
It's more banana shaped, which makes it harder
for it to carry oxygen and can cause pain
and damage throughout the body.
Since sickle cell disease is an inherited
blood disorder, it's something our patients
are born with and they have to deal with it
every single day.
>> Shaniya: I came to St. Jude when I was
around five years old.
Growing up with sickle cell is really different
for me.
I couldn't do what other kids did, like go
outside.
It was a struggle, but I came to see that
if I didn't have sickle cell, I probably wouldn't
be like the person I am.
I don't want sickle cell to define who I am.
I don't want there to be a fear feel like,
"Oh, she has sickle cell, oh, she can't do
that."
Just because I have sickle cell, it does mean
I can't do anything.
>> Nicole: Sickle cell disease affects about
100,000 Americans and 1 out of 400 African-American
babies have sickle cell disease.
That's a lot of kids.
>> Dr. James R. Downing: So we've had great
success in managing children with sickle cell
disease.
Greater than 95% will be able to make it through
childhood.
Our efforts to date though have really been
in managing their symptoms.
Today, in the United States when children
transition into adult care, there is a rapid
increase in the number of deaths that occur
in this population of patients.
This is unacceptable.
We need to better educate our patients so
that they can play a more proactive role in
managing their care as they transition into
the adult care environment.
Simultaneously, we need to assist the adult
care providers so that they know how best
to treat the patients with sickle cell disease.
>> Shaniya: It's just nice to have a group
of friends that really understands because
some days you're by yourself and some days
no one can help you at all, you have to fight
it by yourself.
And to be able to have a support group that
does understand you is really a blessing.
Taking pictures for me is kind of like a tradition
I do on my birthday.
It makes me feel loved.
I do not want to be defined by my illness,
just not someone they're sick all the time
or has this disease.
I want to be someone that makes change.
Just an overall amazing leader and person.
