Health + Wellness

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 pair—they didn’t fit; the green pair—they didn’t fit. It was like, Okay, I guess I’ll wear the white pair…but they didn’t fit either. Now I’m like, ‘What is going on here?’” 

Confused, Kheesa was forced to pair her fancy outfit with a pair of black slides before heading to work. After work, she decided to go to the doctor to figure out why her shoes weren’t fitting. 

Photo courtesy of Kheesa

“They kind of brushed me off, told me it was too much salt, and sent me home,” Kheesa says of the doctors’ response to her concern. 

While moving into an apartment, Kheesa began experiencing more symptoms – this time in the form of achy and swollen knees and elbows.

“I was thinking, ‘Maybe I did too much. I shouldn’t have been pushing this furniture around,’ but it wouldn’t go away,” she shares.

 Kheesa, who rarely got sick, knew something was wrong so she returned to the doctor to tell them what they’d missed. 

“I went back another time, telling them that I can’t sleep at night. My body hurts so much that one morning, I woke up with tear stains on my face. I guess I was crying at night,” she adds. “But now, they’re like, “You must be depressed.” It just kept going like this.”

Determined to find the answers she was seeking, Kheesa, who was on her fifth doctor, remained determined to

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