Joe McKay, 52, a husband and father of two, is a retired New York City firefighter who was a first responder to Ground Zero on September 11, 2001. In the spring of 2002, Joe was at work in Brooklyn when he woke up from a 30-minute long nap with the worst pain he had ever experienced. He described the stabbing pain behind his eye as “…unlike pain I’ve ever experienced before. I thought I was having a brain aneurysm. I ran to the officer in charge and said, I have to go to the ER right now.”

Joe ended up seeing a number of specialists before he was finally diagnosed with cluster headache. The pain of cluster headache is generally intense and severe and often described as a burning or piercing sensation. It may be throbbing or constant, the scalp may be tender and the arteries often can be felt increasing their pulsation. The pain is so intense that most sufferers cannot sit still and will often pace during an acute attack.

The Center for Disease Control (CDC) reported that 21% of first responders have experienced severe headaches. Joe has met two other first responders who are living with cluster headache.  Since his diagnosis, Joe has been working tirelessly to lobby Congress to increase funding for the September 11 Victims Compensation Fund, and advocate for first responders with chronic illnesses. Unfortunately, cluster headache is not recognized as an approved illness under the James Zadroga 9/11 Health and Compensation Act, so Joe’s fight has continued. Please watch Joe’s story here.

For more information on cluster headache visit clusterbusters.org