Setting A New Course: Jodie’s Experience with Cold Agglutinin Disease
As a mother to two teenage boys and a service member in the U.S. Navy, Jodie never expected her life would change completely due to a chronic health condition. She knew something was wrong, but doctors couldn’t link her symptoms to a disease. After a five-year diagnostic journey, Jodie was diagnosed with cold agglutinin disease (CAD), has adjusted her lifestyle and is optimistic about the future.
After returning from a deployment, Jodie didn’t feel like herself and noticed she was significantly more fatigued doing typical activities. She knew there was something wrong, but she couldn’t seem to get the answers she needed.
“We discovered upon some blood testing that things didn't look right. It looked like my red blood cells were sticking together,” explains Jodie. “I did three different blood tests over a period of two weeks, anywhere from seven to nine tubes of blood each time. Each time, I had two 30-year general practitioners on the military base state, ‘we've never seen results like yours before.’”
After five years seeking a diagnosis, Jodie was finally told she had CAD, a rare blood disorder that causes chronic destruction of red blood cells. In people with CAD, the body generates antibodies that destroy its own healthy red blood cells, a process called hemolysis. The disease can cause chronic anemia, debilitating fatigue and circulatory problems, which causes extremities like the hands and feet to be hyper-sensitive to the cold.
CAD can be challenging to recognize and diagnose, in part because it is so rare, and in part because the symptoms can be discounted as anemia. For Jodie, the diagnosis first made her feel empowered – she had answers – but then, she was scared and angry.
The more research Jodie did to learn about CAD, the more she found there weren’t many resources for patients. Without information, it was difficult for her to explain to family and friends. Some didn’t believe the severity of her symptoms.
“I don't think friends, coworkers, and families genuinely understand the impact cold agglutinin disease can have on daily living,” states Jodie. “As an active duty military member, I have to stay physically fit. And I've gone from being very active on a regular basis to some days I can barely walk to my own car without losing my breath. My hematologist at this point prefers I try to keep my exercise to none, if I can, or minimal at best. I struggle with that because it's an outlet for me.”
Jodie discusses the impact cold agglutinin disease has had on her life and her hope for the future.
“Not self, but others”
CAD impacts Jodie’s daily activities. The circulatory symptoms she experiences keep Jodie very aware of her environment, and she can feel her heart race even when resting and her blood pressure increase. While today there are no approved treatments for CAD, Jodie finds solace knowing she isn’t alone.
An estimated 10,000 people in the US and Europe are living with this severe and life-changing disease – and more in other parts of the world. Similar to the U.S. Navy phrase, “non sibi sed patriae” (not self, but country), Jodie believes sharing her story will help educate others about CAD.
In the long-term, Jodie is optimistic about the future for people living with CAD. “If there were a treatment available specifically designed for people with cold agglutinin disease—it would have a tremendous impact,” notes Jodie. “It’s rare. There's not a ton of people, but for those people, you could help make life better.”