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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