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Crohn's Disease: A Family Affair?

Updated: Aug 30, 2020

When my mother-in-law Marie was 31, she was diagnosed with Poly Rheumatoid Arthritis. By the time I met her in 1980, she was completely crippled, barely able to walk or cook. During the following twelve years she declined rapidly, not from the disease itself but from the side effects of medicine she was prescribed, and she suffered immensely. When she passed away in 1992, I saw it as a sort of deliverance for her. She would finally be pain free. But, I also was filled with great sadness because this beautiful, sensitive, smart woman’s life was full of struggle and excruciating pain.

Early in my marriage, my own mother met Marie. One day when we were walking, my mother couldn’t help but warn me against having children, afraid that the disease carried a genetic risk. I brushed the worry aside as I had been told that there was no risk of passing it on. Deep, deep down in my gut though, I knew there probably was a risk. But nobody else in the immediate family of my husband, including his sister and her children, had the disease so it seemed that any worry was unfounded. And so, I had my first child, a beautiful baby girl.

Seeing me, my husband said that as soon as I held that baby in my arms, not even out of the delivery room yet, I would want another. And he was right. Once again, my mother warned me. She never mentioned Marie, she simply inferred that although things were good with our daughter, I would be taking a big risk having a second child. I brushed her worries aside.

My mother-in-law desperately wanted a grandson as she already had three granddaughters. She died a month after meeting her 3 month old grandson. It was almost like she had held on just for that moment. Our lives continued on and her disease and images of suffering faded as I raised our two healthy kids.

More than twenty years passed. Kids grew up doing lots of kid things, went to college, the first one graduated, got a job and moved away, and then our boy graduated. Little did we know at that time that his body was betraying him, but we soon found out when he was diagnosed with Crohn’s disease. And my mother’s words came crashing back into my memory. And for the longest time I felt horribly guilty for being so cavalier.

To be absolutely crystal clear, I have NO REGRETS. Admittedly, I WAS cavalier but my beautiful son was such a gift! He is an amazing human being, very smart and very kind who is also very funny. He has accomplished so much, despite his illness and it is the illness which will make him an incredibly caring doctor because he knows having lived it, what it means to have a chronic disease.

And I also know now that yes, those who have Rheumatoid Arthritis and Crohn’s share some genetic mutations, but it doesn’t mean much. There are other factors we are trying to determine that play a more central role. Back when I first met Marie, we didn’t have the technology that we have today to help us figure these things out. In fact, according to Dr. Mark Davis, a world-renowned Stanford immunologist whose lab is conducting ground-breaking research on Crohn’s disease, we didn’t have the same powerful technology we have today even ten years ago.

Crohn’s was first described back in the 18th century. Then, in 1932 three doctors—Burrill Crohn, Leon Ginzberg, and Gordon D. Oppenheimer described the disease at an American Medical Association meeting. At the time, it was thought to be intestinal tuberculosis. However, existing tests have not been able to determine a smoking gun. Unable to pinpoint the exact cause of the disease, emphasis has been on managing it, often unsuccessfully. But with the new technologies there is a very good chance that we will finally be able to figure out what exactly causes the disease, and in doing so, will lead us to a cure.

I truly believe, as a momma first and as an advocate second, there are powerful reasons for HOPE!

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