The Day My Shoes Didn’t Fit: The Path to a Rare Disease Diagnosis

Photo courtesy of Kheesa Several months before Kheesa realized that she needed to go to the doctor, she recalls one summer day that signaled what was to come.  “I went to a family reunion in Buffalo, NY. They were having an unseasonably warm summer, so everyone was air-conditioned, and I just kept saying, ‘My hands are so achy.’ They wouldn’t stop hurting all week, and they were swollen. I didn’t know if I was having an allergic reaction. I just remember complaining about that,” she says. The next sign that something was wrong was during Kheesa’s birthday in August, when the self-proclaimed shoe lover was picking out the perfect pair of shoes to match her birthday outfit. “I had a pair of birthday shoes that I wanted to wear. They matched this outfit just for reference: it was dark blue, sky blue, lime green, and white. I found a pair of shoes that had all those colors and was super excited. I got ready, dressed up, and went to put on my shoes, but they didn’t fit,” Kheesa recalls. “I was confused because they had fit at one point. I tried the dark blue pair—they didn’t fit; the light blue...