Fighting a Cold War


In 2009, the U.S. Navy deployed Jodie Christopher to Djibouti, Africa as an electronic technician to program radios and work on radar systems. While there, she worked out five to six days a week with an intense, hour-long free-weight and cardio regime, which she sometimes supplemented with a five-kilometer run.

But about a year after returning home from Africa she started putting on weight, even though she hadn’t had a lifestyle change that could explain the extra pounds. She also began to feel fatigued. She went to see her doctor, which began a five-year diagnostic odyssey for Christopher.

Doctors had difficulty drawing Christopher’s blood and grew perplexed by the results. Military doctors referred her to civilian physicians. All the time, Christopher was sleeping more, but wasn’t feeling rested. At times she had trouble breathing as if she had asthma. And the emotional toll of having an unknown condition began to weigh on her.

A specialist suspected she had megaloblastic anemia, because her blood cells appeared unusually large. Her physician referred her to Mayo Clinic, which decided to remove her spleen, which provided immediate relief. The difficulty she had breathing disappeared.

Christopher liked to relax in the evening with a powerwalk, but when she returned from one of her evening outings at her home in Jacksonville, Florida one cool night, her children looked at her and wanted to know what had happened to her. She had bright purple blotches on her face.

“I was bright Barney-purple all over my body,” she said. “Removing the spleen had revealed the underlying cause. I had cold agglutinin disease.”

Cold agglutinin disease  is a rare autoimmune condition in which the body’s immune system attacks its own red blood cells. As antibodies attach to the blood cells, it causes them to clump together and destroys them. Though severity can vary widely among patients, the condition can be serious and life-threatening.

When Christopher has her blood drawn, warm compresses have to be applied first. Once the blood is drawn, it must be kept warm and immediately read or the cells might begin to stick together.

Episodes of cold agglutinin disease are triggered by exposure to cold. A small drop in temperature, even for someone who lives in Florida, can cause a cascade of events. When Christopher turned purple, it was a sign that the condition has been triggered.

“That’s when the reaction is so bad that your blood cells are actually dying,” she said. “When you see someone is turning purple, their hemoglobin is going to drop significantly in a very short amount of time, and that is what happened to me. It feels like asthma that you can’t relieve. You can’t get a full breath. You feel you can’t get enough oxygen in your body, which leads to the fatigue.”

Having the condition has its consequences in Christopher’s everyday life. Even though the weather is warm in Florida, she has to be ready for any drop in temperature. She keeps a sweater, knit cap, and gloves in her car. If she wants to go to the grocery store, she has to make sure she is wearing jeans and sweater and may need to cover her ears. She keeps a space heater under her desk at work and an electric blanket. She can’t go swimming in a spring, and she’s had to scrap any thoughts of going white water rafting one day as she long hoped to do.

She takes vitamin B12 to keep up the production of her blood cells, and has been treated with Rituxan, an infused medication that’s used to treat several autoimmune diseases to quiet the immune system.

Her doctor has been looking at enrolling her in clinical trials for a potential new treatment, but she describes herself as a rare case within a rare disease. Her blood work makes her doctor think that even though she qualifies for one study under way that a second study that will be starting may be a better fit for her.

In the meantime, she has found comfort connecting to a Facebook group of people with the disease and is happy to have a name to put to her condition.

“Now I don’t feel like I’m crazy,” she said. “I feel like there’s something I can research and understand. It’s helped me adapt.”

November 6, 2018
Photo: Jodie Christopher

 

Filed Under: Awareness, Global Genes, In Rare Form, People & Organizations, Rare Community

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