Saturday, November 30, 2013

My story

Hi my name is ChyAnn. In September 2011, I was diagnosed with a rare disease called Lupus (SLE) with nephritis My life changed drastically when we learned that I had lupus. My mom was really surprised because Lupus is supposedly not inheritable; but my mom had Lupus and she learned that her great grandmother had Lupus also. When I learned that I had been diagnosed with lupus I was 10 years old, just starting 5th grade. It was the hardest months of my life. I felt alone not being able to do all the things the other kids could do, getting tired so fast and feeling weak. Having no idea how I would feel in the morning, it wasn't fair or right. I thought everyday "Why me"? What did I do to deserve this. It was horrible. 

But the month I will never forget is February 2012 when I started having to take a medication called prednisone(steroids). When I first started taking prednisone they had to check me monthly and I was sure I missed over 40 days of school that year. I was once known as the skinny girl, all skin and bones. As the months progressed so did the doses of prednisone (steroids), they started at 10mg not ending till it reached 60mg. All of my family would say you starting to get chubby, I started to hate how big I was. To make things worse the steroids were not doing the job. So my doctor made me change my prednisone pills to steroid injections with needles. That's when it got all bad. It was right after school ended I was miserable; the injections got me so fat! I went from being a skinny 80 pound girl to  133 pounds. I hated my self, but that didn't keep a smile off my face. I would stuff my face with food, I would just eat because I knew I could. Even though I felt horrible I didn't want to let anyone know I was feeling When I returned to school no one recognized me, I could hear people talking about what could of happened. I didn't tell anyone because I was to embarrassed and shy to tell anyone what happened to me. But as the year went on people got used to me and noticed I was the same old ChyAnn. 

This year I have been slowly losing weight because the lowered my prednisone, my prednisone got down to 7.5 mg of prednisone. But early November 2013 they had to bring my steroids back up to 60mg. When I first found out I started to cry. But as always my mom calmed me down stating things could have been worse like my stay in the intensive care unit earlier in the year. I am glad to say I'm very stable and feeling good these days. I don't know where the future will take me, but I always have to remember I HAVE LUPUS,LUPUS DOES NOT HAVE ME!


  1. ChyAnn, I am so proud of the fact that you are embracing your Lupus diagnosis and reaching out to teens in similar situations. It takes a brave soul to admit they have a life altering disease and you are creating a forum for other teens to also have a voice. Keep up the good work!!

  2. Chy, you never cease to amaze me! Just when I think you are an amazing kid, you do something so mature and thoughtful and selfless...
    I have an autoimmune disease too that is similar to Lupus, so much so that for a few years I was misdiagnosed with Lupus.
    Our struggles are the same... Pain, steroids, weight gain, hospitalizations... but I am learning to embrace life and all the curve balls it has to offer.
    Kudos kid, I am super proud of you...