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Brad’s Story: Living with Cold Agglutinin Disease

When Brad retired from the Canadian Coast Guard, it was not because he was ready for a life of leisure. He was forced to retire because of cold agglutinin disease (CAD), a rare blood disorder which prevents him from being able to do the job he is so passionate about.

ACAD is a chronic blood disorder that results in the constant and premature destruction of red blood cells by the body’s immune system. It is extremely rare, affecting an estimated 16 out of one million people. Physical symptoms of CAD can include chronic, severe anemia, shortness of breath, jaundice and crippling fatigue.

Because of a lack of widespread understanding of the disease, patients with CAD are often told to avoid becoming cold, as that can be a trigger for some CAD-related symptoms. However, cold avoidance may not effectively manage the disease; symptoms are prevalent in all geographies and seasons, regardless of climate.

For Brad, a job as a rescue specialist in the Canadian Coast Guard made it impossible to avoid becoming cold. “I used to be able to go out in weather where people would go, ‘I’m not going out there, it’s too scary.’ Forty-foot seas, and I would go out,” Brad said. “To have somebody put the brakes on it just like that and say, ‘you can’t do that anymore,’ that was a hard hit to my ego.”

Watch Brad’s Story: Living with Cold Agglutinin Disease

In addition to the challenges brought on by the cold, Brad has also had to learn to manage crippling fatigue, which on bad days, affects every aspect of his life. “Being fatigued is taking tired 10 steps forward. You now have mental fog; you have days of non-clarity, where you’re so tired that you don’t even want to eat,” Brad explained. “It controls your life, that’s the hardest part about it.

Brad first felt symptoms of CAD in 2011 while out on a search and rescue mission. His hands became so cold he said it would have been more comfortable had someone cut his fingers off. He went to the doctor and had blood work done. After several years of tests, he received a diagnosis of CAD in 2013.

“When they said I had primary CAD, cold agglutinin, my first reaction is ok, what is it? And second reaction is, well let’s fix it,” Brad said. “And unfortunately, the doctors all say exactly the same thing. There is nothing we can do for you, there is no cure for it. And that’s when they say don’t get cold.”

Brad’s life has changed significantly since receiving his diagnosis. In addition to retiring, Brad can no longer go swimming or participate in obstacle course competitions, both things he loved to do. He checks a weather app every day before leaving his home and always wears extra layers.

Despite the changes he’s made to his life, Brad is determined not to let CAD define him, and to continue to participate in volunteer activities and spend quality time with his family.

“I refuse to be locked in my house, to let this rule my life 100 percent,” Brad said. “It does change your life, but don’t give up. Keep moving forward because there is always tomorrow.”

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