I was diagnosed with juvenile arthritis in the summer of 1994.
At that time, NIAMS was approaching its 8th birthday, I was approaching my third to give
you a timeline.
My parents were afraid I wouldn't be able to live the life of an average child.
On top of the normal concerns that parents have for their two-year-olds, my parents had
to deal with not knowing if I'll walking or be in a wheelchair a year from then.
Thanks to medication available, I avoided that fate, but I live still with my arthritis
daily.
That summer, I started almost immediately on methotrexate, which I mentioned before,
it’s a chemotherapy medication that alters DNA replication and is used in low doses to
treat arthritis.
The exact reason why it works is not really known, but it's been working for me for 17
years.
So I don’t question it.
So in the mid 1990s, that was considered a very aggressive treatment for patients.
But thanks to methotrexate, I'm up here today in heels, no less, standing in front of you
all instead of sitting in a wheelchair.
I have been able to live a pretty normal life considering.
For the next nine years, my parents and my doctor and I, when I was old enough to really
understand what was going on, experimented with the methotrexate doses and we supplemented
it with daily ibuprofen.
I was on extreme amounts and it’s a miracle I don’t have stomach ulcers today.
And the occasional stint on prednisone, which, I like to say, is the reason I'm so short.
It stunts growth.
And my sister is taller than me, she’s been taller since she was 12.
So I would like to credit that to the prednisone and not my genes.
Over the course of almost a decade, we watched as my arthritis was on a roller coaster.
Most of the time, I was able to participate in the same things as my peers.
I did gymnastics recreationally, I did a club soccer team through elementary and high school,
but there were days and months at a time I was nearly immobilized due to the pain and
inflammation.
Particularly, for a couple of months stint when I was in first grade, my mom was handwriting
my homework for me.
I was dictating and come home from school, so fatigued from the arthritis, I would fall
asleep on the couch almost immediately.
So during the time when my joints were on a roller coaster, the first biologic medicines
were being approved for use in children.
Shortly before my 11th birthday, my parents and doctors and I decided to try the medicine.
Because the methotrexate was giving me issues with my liver, we decided to see what else
was out there.
It is my belief that medication is the reason I was able to walk here today.
Without it, my middle school and high school experiences would have been wildly different.
I would have been the kid in the wheelchair who was wheeled across the stage at graduation
instead of walking across.
In the fall of 2002, before I started the biologic medication, there were days when
I could hardly walk.
Even though I was still on the soccer team, my coach only played me 10 minutes at a time
and took me out immediately.
I hated it, but I knew that was what I had to do.
By the following January in 2003, my classmates and parents thought I had been cured.
That's how extreme the difference was in how I was moving.
I could run for whole periods.
My parents were still leery to let me play, but I felt so much better than I had ever
had in my entire life.
I was more capable of doing my daily tasks, so I continued to play soccer until I started
high school.
To give you an idea how much I have improved, I came home one day freshman year of high
school and announced I was going out for the track team.
Not only the track team, but I was going to try to pole vault.
It gets better.
So my mom was overly confident, I think, at the time and she said, you can do it if your
rheumatologist approves of it.
So we call them up and I think my mother still regrets that decision because he was like,
sure, I don't have a problem with it.
As long as she can move, she can pole vault.
So I did.
I was a pole vaulter all through high school.
I was by no means a track star.
I never vaulted 10 feet like the other girls on the team.
I barely got over six feet.
But the fact that I was out there doing it with all the joint damage that I have is a
huge testament to the medications and all the research that went into medications that
I have been on.
My parents were concerned about it because regardless that it’s a dangerous sport for
anyone, I have weak ankles and joint damage everywhere, but I was able to do things because
of the medication I was on.
It’s because of these researchers that I am able to live the life I love now.
I just finished my first year of college.
I'm pursuing a nursing degree at York College in southern Pennsylvania and I have to go
to the hospital once a month for infusions.
Other than that, I am your normal college student.
I didn't like my roommate, I didn't like the food at the dining hall.
I pledged a sorority and I would stay up half a night writing papers due in six hours.
All the things I’ve accomplished in my life are as a result of medical research.
Without the biologic medicines I depended on for almost half my life, I would be -- I
and nearly thousands of children, be permanently wheelchair bond and live lives they love.
I have been lucky enough to see kids two years younger than me completely avoid the mystery
years I had when I was younger.
Kids that I know at only 15 already know that their joints are in thousands times better
condition than mine ever were.
I have been able to live my life to the fullest.
I have done so many things that I wouldn't be able to otherwise.
Medications gave me back so much of what my parents feared I would lose, and that summer
of 1994 they never knew it was going to happen, but we can look back now and it was an unfortunate
dark time, and now I have improved beyond our wildest dreams and for that I'm extremely
grateful.