Why I Walk : Ivy Shapiro

Ivy's story for diagnosis is not all that uncommon; it took almost ten years to be properly diagnosed with SLE. Her initial symptoms started when she was in her twenty's, but the formal diagnosis did not happen until April 2010, when Ivy was almost thirty years old. Being diagnosed came as a relief to her, because at least it was an answer. She had so many symptoms that never made any sense to her but all added up to one diagnosis, she had rashes on her face, sun sensitivity, horrible fatigue, stomach problems, joint pains, fainting, fevers, mouth sores, breathing problems, and all of these things always seeming to improve with steroids and other anti-inflammatories.

Little did they know that although puzzle pieces did indeed fall into place, not all doctors are prepared to treat lupus and the flare ups that come along with it, but in her experience many doctors were not taught much about lupus, and the nurses were taught even less. She soon learned to advocate for herself, and when she is unable her parents step in.

Ivy is thankful for her incredibly supportive parents; her mom also has SLE, Sjogren's, and NMO, and yet is still her caregiver.  Ivy's Dad is just as helpful, working full time, sometimes from home when needed, and taking time to take both of them to their many doctors' appointments when necessary.  They help her handle this "up and down seesaw," as she calls it, which is lupus!


Join Ivy and Team Ivy's Butterfly Warriors as they Walk to End Lupus Now! Donate and Register!