Alia El-Qunni

It’s hard for me to completely remember what my life was like before March 13, 2011, because the day I was diagnosed with Systemic Lupus Erythematosus changed everything in my world, and I am now a whole new person. I have also been diagnosed with Membranous Lupus Nephritis, meaning that I have level 5 kidney damage on both of my kidneys, and Sjogren’s Syndrome, which affects my skin and eyes.

When I began my junior year of high school, I knew I was going to spend the year worried, but I thought it was because I didn’t know how I would do my hair for prom or that I needed to figure out where I would go to college. The stress I underwent was on a completely different level than I could have ever imagined. I spent three months in and out of the hospital terrified that at any point they would tell me I had lupus.

When the doctors finally broke the news and informed me that I would need to change everything in my life, I was sure that I was in some sappy movie. I was heartbroken that I was not going to be able to spend my senior year with my closest friends, but rather in my house with a tutor. I am sick. It hurts to know that I am going to be battling it the rest of my life, but I am now filled with a strength that moves me forward every day.

That is the strength I carried with me as I decided to finish high school online and that I used to finish an entire year’s curriculum in two months. It is my drive to overcome that contributed to an academic scholarship to Lindenwood University and pushed me through my first year. I will rely on my perseverance as I move on campus this fall and when I become a teacher. I will use my experience to earn my Master’s degree in counseling and work with others that are struggling.

I have been fighting for over a year now. But until last month, my family and I thought we were fighting alone. At the Summer Jam Youth Retreat, I learned that the Heartland Chapter is out there fighting for the 50,000 of us living with lupus in the territory with as much strength, drive, perseverance, and experience as I use to fight for my own life. I also met other girls who are struggling from all over Missouri, eastern Kansas, and southern Illinois.

Meeting girls like Sam Powers has proven to me that together we are even stronger than I am alone. We were of all different backgrounds and ages. Sam is 11 and was diagnosed with she was 9. Sam’s story is different than mine, but we have a common goal. We want to personally overcome the challenge lupus has given us, tell the world about our fight, support others with the disease, and find a cure!

With the support of Sam and the other girls I met, I know there is nothing I can’t do. I may have different battles than my peers, and lupus may attack every organ in my body, but this disease will never strip me of my strength, drive, perseverance, or experience. I cannot convey in words how important that was for me to learn.