Karley
Diagnosed at 14

What do you want others to know about lupus?

Even though we might not look sick, lupus affects us in so many ways and makes doing ordinary tasks very difficult. I constantly get criticized for sleeping too much, but lupus makes me so exhausted and in pain. We need a cure!

Why is lupus a cruel mystery to you?

Ever since I was very young I would always get rashes all over my body when I was out in the sun for too long. When I was 14, my legs were covered in petechiae and my blood platelet count was at 3 (a normal amount is 150-400). Before I was officially diagnosed, I spent week after week at the hospital trying different medications and blood transfusions that did not work. Although I have now been diagnosed with lupus (which also gave me Raynauds and Sjogrens) and my platelet count has been at a healthy level for 5 years, lupus still affects me every day. I have had numerous surgeries done on my salivary glands because of Sjogrens. My joints are almost always in pain. I can't go outside without putting on 100 SPF sunscreen. Before I was diagnosed with lupus, I was in the best shape of my life. I did dance classes, and I would run miles every week. Once the symptoms hit, even walking up a few flights of stairs became exhausting for me. The miles that I used to run weekly were too tiring, and I don't dance anymore. Lupus is a big jerk and we need to find a cure to get rid of it!

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