One way to look at today's guest is that if he were a zebra, he would have extra stripes because, unfortunately, he has more than one rare condition, which is a first for a guest in our Year of the Zebra series. After struggling with various GI issues most of his life, Brian Kennedy, an Elsevier colleague, was diagnosed several years ago with exocrine pancreatic insufficiency (EPI), a rare disorder that prevents the pancreas from playing its proper role in aiding digestion. At the same time, he was told he had MALS, another rare condition, that interferes with blood flow in the abdomen. Both of these disorders can cause chronic pain in addition to a host of other difficult symptoms. While it was a relief to finally have answers, Brian says it also sparked a long period of grief. “You start to realize your life is not going to go back to the way you had it, but you just have to accept it and then you sort of think about the things I can do and focus on those and not the things that I can't do anymore,” he tells host Michael Carrese. That shift in perspective and connecting with a community of other EPI and MALS patients has helped Brian to stay as positive as possible and focus on being as healthy as he can under the circumstances. Listen-in to learn about these challenging diseases, the therapy that is helping Brian eat without subsequent debilitating pain and his advice to providers about dealing with rare disease patients. 

Mentioned in this episode:

Primal Pancreas by A. Toxopeus

Mission Cure

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