Willow Pill tells news about her lifelong fight with cystinosis, a rare genetic illness, and how she filmed RuPaul’s Drag Race while suffering from paralysis.
Willow Pill has been a star on season 14 of RuPaul’s Drag Race, earning a berth in the Emmy-winning reality show’s grand finale thanks to her incredibly inventive aesthetics, funny wit, and eccentric charm.
But there’s a personal struggle underlying the 27-year-stellar old’s achievement.
Willow, who lives in Denver, has battled cystinosis since birth. A rare genetic illness that affects nearly every function in the body, beginning with the kidneys.
Willow tells the news, “It’s a freakin’ hungry and thorough sickness. When my kidneys failed when I was 14, I was on dialysis and received a transplant from my brother within a year. However, cystinosis begins to permeate other organs.”
They has had a wide range of symptoms. “Dysphasia has severely impacted my throat, which means I have difficulties speaking, swallowing. Drinking, and eating.” Cystine infiltrates my eyes, resulting in clouded vision and pain. My muscles have started to degrade over the last four or five years; they’re not as big and powerful as they used to be, and I have extremities of the hands and feet.
It affects my mind. Then there’s the fact that anemia is a side effect, so I’m exhausted.”
“It affects everything,” she continues.
An aberrant buildup of cystine, one of the body’s necessary amino acids, causes lysosomal storage disorder. Although there is no cure, timely therapy can help decrease the onset and progression of symptoms.
Willow explains, “I take a lot of meds – about 20 pills a day. And, even though they’re supposed to make you feel better, taking that many medications every day as a kid makes you sick.” It’s for the greater good, so your body can work for a long time, but you’re sick. It’s not a lot of fun.”