A Medical Zebra
Since she was a child, Andi has lived with unexplained illnesses and infections. One year, she missed nearly 30 days of school, but through it all, Andi tried to be like everyone else.
“I always had to try harder and work harder than others,” Andi said. “I was determined to keep up with the regular kids.”
And Andi went about her life, raising a family with her husband, Bob, in Washington state. Looking out to unusual explanation — as well as the seemingly straightforward diagnosis.
Mount Rainier from a remote island, Andi could see eagles and whales while continuing to live without a diagnosis.
Despite her health issues, Andi worked twice as hard and did the best she could. It wasn’t until she was in her mid 60s, after losing 20 pounds unexpectedly, that her doctor believed something wasn’t right. Her bloodwork appeared normal, but Bob, too, suspected there was more to it.
“I was excited thinking my body is going to settle in a nice normal weight,” she said. “Bob was an advocate and pushed the doctors to figure out what was wrong with me.”
Two years went by with no answer; Andi got sicker and sicker. But Andi and Bob refused to give up. When she mentioned the similarities to her childhood sickness, her doctor immediately realized what was going on and referred her to an immunology specialist. It was primary immunodeficiency, a rare disease that prevents the body’s immune system from properly functioning.
“All the pieces of my life kind of fell together,” Andi said. “I was considered a medical zebra.”
The zebra is widely considered the mascot of the rare disease community based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras.” As the world has learned more about rare diseases, doctors now look for both the zebra — the
Andi’s doctors started her on an infusion treatment to reduce her symptoms and strengthen her immune system. Though Andi said she was relieved to finally have a diagnosis, the idea of regular infusion treatment left her uneasy.
“There was some anxiety with my treatment,” Andi said. “I lived 60 years without a diagnosis, but I know it will help.”
To help with the cost of her care, Andi applied to The Assistance Fund’s (TAF’s) Primary Immunodeficiency Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease, such as copays, health insurance premiums, and other out-of-pocket expenses associated with treatment — including help with her infusions.
“I think TAF is amazing,” she said. “I have referred many people to TAF.”
To keep herself occupied, a friend recommended Andi take up painting. For over seven years, Andi has been creating art — pieces like her winning submission in TAF’s 2023 patient art contest. Her painting features a zebra alongside six white horses, each representing one of her five grandchildren along with her great-grandchild.
“I was inspired by Walter Crane’s painting of Neptune’s horses,” Andi said. “I want to give hope to young people.”
Andi’s artwork now hangs in her old neighborhood clubhouse in Arizona, where she and her husband were “snowbirds” for years. After nearly throwing it away when the couple returned full time to Washington state, her neighbors pleaded with Andi to keep it. Now, generations can recognize and appreciate its poignant beauty.
“I am the determined zebra,” she said.
