Mike McCready’s Life with Crohn’s

As lead guitarist for Pearl Jam, Mike McCready has lived the charmed life of a rock star for a long time, or so it seemed to fans. But rock star status couldn’t change the fact that Mike was also living the life of a Crohn’s disease patient. More than once, a Crohn’s attack forced him to run off stage in the middle of a concert in a desperate search for a bathroom. In a HealthTalk interview with Rick Turner, Mike shares his good and bad moments with Crohn’s disease and offers advice, encouragement and a lot of heart to others living with Crohn’s.

Rick: You take a straight-up approach when talking about a disease that many people are ashamed of, frankly, and pretty secretive about. Why are you so out there with your Crohn’s disease?

Mike: I was not always that way. I was quite embarrassed by it and ashamed and wanted to not talk about it and hide. After years of doing that and living miserably, my wife got tired of me complaining about it, and said, “Hey, look, you should try to lend your voice to this and promote awareness. Do something positive with this experience.” And so a light went off [...] continue the story

Hope Comes in a Capsule

Heather Kirkwood’s mother always suspected her children had a bleeding disorder. During their childhood Heather and her younger brother were tested four different times for suspected bleeding disorders, but every time the tests came back negative. At 21, after two years of fighting what had been diagnosed as Crohn’s disease, Heather was severely bleeding from her large bowel. Doctors felt an ileostomy was the only solution, but were concerned about the bleeding. It was then that a hematologist suggested she might have Hermansky-Pudlak Syndrome.

At the time so little was known about the syndrome, and so few people diagnosed, that the diagnosis was made based only on clinical presentation. Heather had no idea HPS was at all related to albinism, or that it put her at risk for pulmonary fibrosis.

A decade later, while seeking a second opinion for an unrelated complaint, a physician asked Heather for more information about HPS. “I’d been told it was a minor bleeding disorder and was easily treated, so I never thought much about it,” explains Heather, “I went online to do some research to answer the doctor’s questions, and it was only then that I discovered how serious this syndrome can be.”

Heather immediately reached out [...] continue the story