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PATIENT STORIES

Ashley’s Fight

My journey actually started at 16 when I was diagnosed with Raynaud’s disease. I wasn’t diagnosed with lupus until age 21. Since then, it has been an up and down journey with a lot of challenges. I’ve dealt with a wide range of issues including migraines, arthritis, lupus nephritis, tachycardia, autonomic dysfunction, and vasculitis. Two years ago, I even shaved my head because I had severe hair loss for 8 months. My treatments range from 20-some pills a day to multiple doses of IV steroids to IV biologic treatments. I recently began immunoglobulin replacement therapy that will be once a week for the rest of my life. While lupus research has certainly come a long way, long term immunosuppression from steroids and other medications still have a high cost to patients, with complications such as osteopenia at the age of 31 and now losing my immune system completely. Raising awareness is incredibly important to me and gives my journey purpose. My mantra is always continue to – Fight * Live * Love!

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