My Body Was Destroying Itself—And It Took Doctors 5 Years to Figure Out Why

By | June 22, 2019

Imagine Florida being too cool: That’s the case for this woman with a rare condition called cold agglutinin disorder. When the temperature dips below 75 degrees, her body turns on itself.

Sometimes you wake up more tired than usual. Sometimes the weight seems to pile on for no reason. But it’s rare that your skin will turn purple after a walk. That’s what it took for Jodie Christopher, 43, of Jacksonville, Florida, to finally figure out why her body was going haywire—and her diagnosis radically altered her life.

Christopher is on active duty in the U.S. Navy: Upon returning from an African deployment in 2010, she began to suspect something was wrong. “I was working in recruiting, so I assumed it was the new desk job that was responsible for my weight gain. What was different, though, was that no matter what I tried, I couldn’t lose it.” Prior to the sudden onset of fatigue and weight gain, Christopher had been in great shape; she worked out three to five times a week, and she provided fitness training to others—something she loved to do.

“I was struggling to take deep breaths, and I couldn’t figure out why,” she remembers. Christopher went to the on-base physician for answers. When her lab work revealed abnormalities, the doctors there wanted to bring in specialists to study her. “They said my blood work showed possible megaloblastic anemia [a bone marrow disorder], and they were sending me over to Twenty-First Century Oncology for further testing. My hemoglobin was low—an eight, and a normal is 11 to 12. I had a bone marrow biopsy there, which was normal.” Christopher had done her own research and knew that her symptoms didn’t align with those of megaloblastic anemia. “I wasn’t buying it, I didn’t have the same symptoms, and I knew I would be showing more signs.” Since Christopher’s symptoms diverged from these tell-tale signs of anemia, she decided to see another doctor.

After a referral to the Mayo Clinic, doctors diagnosed her with another type of anemia and an enlarged spleen. Surgeons removed Christopher’s spleen after steroids failed to reduce the swelling. She felt a bit better, but then: “I came back home from an evening power walk, and my son said, Mom what’s wrong with your skin? I asked what he meant, and he said, You’re all purple! I looked at my arms and chest, and sure enough, I was completely purple and white.” Though purple skin is one of these 13 signs of iron deficiency, low levels of iron was not Christopher’s problem either.

The new symptom finally led her doctors to the right blood tests: Christopher had an incredibly rare autoimmune disorder called cold agglutinin disease (CAD—it affects one on a million people). Cooler temperatures provoke the body’s immune system to attack healthy red blood cells. No one’s sure what causes CAD—it’s neither genetic or communicable. “I have had a couple of Rituximab treatments, which slows the body’s reaction to cold temperatures. I also take folic acid and B12 supplements, both of which support the production of red blood cells.”

The diagnosis came both as a relief and a shock to Christopher, who says she has had to change her life in ways that most people would never imagine. She can’t be in temperatures below 75 degrees Fahrenheit. “I keep warm clothing in year-round. Going into the grocery store can pose a problem because of how low they have to keep the temperature. If I go to the beach, I might not be able to go into the water.” Even working in an office with forced air can be tricky. But she’s adjusting: “I can have a life again, I just have to be smart about it.”

Similar to Christopher’s disorder, which went undiagnosed and untreated for years, doctors are likely to miss these 11 other diseases. 

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