Hello Fight Like A Girl Club! My name is Alyssa and I have Systemic Lupus Erythematosus. I am 14 years old and a freshman in high school. I was diagnosed 6 years ago by my rheumatologist and have since been battling with lupus.
Lupus is a chronic disease in which your immune system thinks that your blood cells and platelets (which protect your body from disease) are the virus. My friends have always asked me why I couldn’t play sports with them, why I was always out of school, and why I couldn’t go outside in the extreme cold. The symptoms of lupus are extreme fatigue, fevers, Raynauds syndrome, extreme bruising, unusual hair loss, and swelling/aching of the joints.
I’ve told my story to hundreds of people at conferences for arthritis and lupus. However, it’s hard for older people to connect with me because there are very few teenagers like me that have lupus. I was the only teenager at the Lupus Foundation Conference. But since lupus falls under the arthritis umbrella, I participate in the Arthritis Foundation with my JRA friends. We all share a special bond and one bond is where it all began. It started with an away camp called Camp JRA.
For a whole week, I can be myself without worrying about my lupus. The wonderful people there have taught me that there are no limitations to how to live your life. When I came home to my loving family, I came back a different kid. I was happier and I had made a lot of friends who could understand how I felt. I’ve been going to camp for 4 years and I plan to go back every year.
When I tell someone I have lupus, they ask me what it is and how I can get it. Scientists are trying to find the cause of lupus. Signs point to the environment, family history, genetics, etc… Some people, when I was first diagnosed were afraid to even touch me, because they feared that they might catch it. For the record, LUPUS IS NOT CONTAGIOUS!
Lupus has caused many pains in my life, but also it has made me stronger than most people. I know that I have to advocate for myself and to be strong no matter what. I was told by my doctor that lupus was life threatening. I’ve been to CHOP many times and been given medications that have almost killed me. I thank God every day that my mother was a certified nurse for 23 years in ICU and knew I was having an allergic reaction to the medications. My family and friends are the closest things I have and I would never want them to go away. My sister Molly is 12 and she tells her friends my story and they have many questions for her. She is a true hero and I love her with all my heart.
When I was in grade school, people would make fun of me. But some of my friends had the courage enough to stand up for me and tell them off. I have held fundraisers and other events to educate them on lupus. I’ve also raised about $2000 for the Arthritis Walk.
Lupus is not curable and I will have it forever. But lupus has not defeated me. I have defeated lupus. It will never have control of me because I am stronger. People have always wondered why I smile when I tell my story. My answer is only this- I’m happy that I’m alive and that I have my loved ones standing beside me.
I am myself. I am 14 years old. I am a freshman in high school. I am an advocate. I am me and that is what i will always be. 🙂
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.