It all started with a spider bite.
I had gotten bug bites before. Who hasn't? But this time was different.
I started having strange symptoms: joint pain, a stabbing pain that felt like 10,000 knives in my stomach, extreme fatigue and a rash on my face. After what felt like a million rounds of blood work, and 15-20 doctors, I learned that it wasn't the spider bite at all that was causing my pain. I had lupus -- an autoimmune disease that has attacked my kidneys, central nervous system and other parts of my body. They told me there's no known cure.
Upon diagnosis, I was treated with heavy doses of chemotherapy -- a treatment typically associated with cancer -- and other strong medications, such as steroids, to manage my overactive immune system. I felt like all I was doing was taking pills and getting poked with needles. I was trying to do everything right and not feeling any better.
While the treatments helped manage my lupus symptoms, there were also serious side effects. They affected my brain, nervous system, kidneys, and bones, among other things.The steroids caused me to gain almost 70 pounds in one summer, making a normal childhood impossible.
Lupus took over my life and my whole family's life. I had to stop playing softball due to photosensitivity; I had to leave my 5th grade graduation early for blood tests; I couldn't stay in my honors classes because of many missed school days and the effect of the drugs on my memory.
In the eight years since my diagnosis, I have come to learn how cruel and mysterious this disease can be -- 100-plus hospital visits tend to have that affect. But instead of letting it get me down, I have channeled my energy into helping others who have lupus, and advocating for research and treatment. I know that what I have learned from my experience can have a positive impact on the lives of others.
On my first day of chemotherapy, my doctor had my friend Una and I give each other a gift for each day in the hospital. My first gift to Una was a purple teddy bear with a Livestrong bracelet. I liked the idea of strength in the face of our treatments. As she opened the gift, something clicked. We should have lupus bracelets, we said, as a way to start conversations about lupus and help people understand this devastating disease and its impact. We contacted the Lupus Foundation of America to help us with the cause and they asked us to be their teen spokespersons.
With the help of the Lupus Foundation of America, I am able to raise awareness about a disease that so many do not yet understand. I had the opportunity to meet and participate in a photo shoot with Kerri Strug, the Olympic gold medalist, in NYC, and I spoke at the launch of their Help Us Solve theCruel Mystery™ National Bus Tour in Washington, D.C. The bus includes a petition that anyone can sign online, to advocate for more research to find a cure and help people like me who live with lupus.
For me, life with lupus means never knowing what each day will bring, but I have been committed to beating lupus since I got that life-changing bug bite when I was 11. The picture below, painted by a family friend when he was eight, hangs in my hospital room and reminds me to stay strong during the hard times. By signing the petition, you are helping me beat lupus and helping the hundreds of others who are diagnosed each year. I am taking control and will not be frightened away from beating this cruel mystery.
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