Crohn’s a very personal disease

My sister Nina has Crohn’s disease, and a severe form of it at that. She never complained much -- she even had a sense of humor about a disease that some people consider unfit for polite conversation.

Amy Swinderman
The Summer Solstice came and went while we were preparingthis issue, and beyond my office window, children frolicked under sprinklers intheir backyards and cheerfully rode their bikes across sun-dappled sidewalks.
 
Summer was always my favorite time of year as a kid, givingme a much-needed break from my honors-program studies to write, play andindulge my overly active imagination, with the exception of one worry-filledsummer around my 10th year—a time I found myself reflecting on thismonth after interviewing the folks at the Crohn's and Colitis Foundation ofCanada (CCFC) and Vertex Pharmaceuticals Inc. (see story, "Probing the bowelsof disease").
 
 
That summer, my mother packed up my two younger siblings andI, and we temporarily moved into the home of my older sister, Selina—knownaffectionately to everyone in my large family as "Nina." Nina is about 17 yearsmy senior and the oldest of the seven children in my family. By the time I wasborn—kid number five for my parents—Nina was starved for a sister, and spentmany hours playing with me in her bedroom, introducing me to the 1970s rocksongs I still covet. As time marched on, she married twice and had three children,and had a successful career working for a law firm in Cleveland. 
 
She was also very ill. Nina was often felled by Crohn'sdisease, and a severe form of it at that. She never complained much—she evenhad a sense of humor about a disease that some people consider unfit for politeconversation— but Crohn's sometimes kept Nina from playing with her children orgoing to work, and periodically, it put her in the hospital for long stretchesof time.
 
 
The summer of my 10th year was one of thosetimes. When steroids failed to suppress Nina's flare—the word "prednisone"became part of my everyday vocabulary pretty early on—she went into thehospital for what would end up being one of the first of many surgeries. Andbecause her three children were very young—one still in diapers—we moved inwith them to help take care of them during their mother's absence.
 
 
I don't know how my mother did it, considering she had threechildren of her own to take care of, but she mustered the strength to manage,as she always did. It was a hot, sultry summer, the kind for which Cleveland isinfamous. We did our best to keep the kids occupied, entertained and cool as mymother helped my brother-in-law manage the house and made visits to thehospital.
 
I remember being surprised that my nieces and nephew were soadaptable to the situation. But you see, from the time they were babies, Ninafought to live as normally as possible with her disease. It was always a partof their lives. My sister's children have never known their mother to be healthy.Just happy somehow in spite of the immense toll Crohn's took on her.
 
 
Today, my sister is 54, and her children are now grown andhave children of their own. Crohn's is still very much a part of Nina's life.It always will be, because there is no cure for it. She's part of thegeneration of patients who served as guinea pigs for the limited treatmentsthat are available, which presently address only some of the symptoms ofinflammatory bowel diseases (IBD).
 
 
So when I had the opportunity to talk to the people at theCCFC and Vertex about their efforts to better understand the biology andgenetics of Crohn's, I jumped at the chance. These people and their academiccolleagues understand what the experience of my 10th summer was allabout—a patient succumbing to the terrible effects of IBD, and the impact itcan have on her family.
For some drugmakers and researchers, finding treatments forunmet medical needs is all about numbers: how many people suffer from it, howmany treatments are available, how much commercial opportunity is available andhow many years and dollars it will take to bring new therapies to market.
 
 
But for the CCFC and Vertex—and my family—it's personal.Because diseases like Crohn's are highly personal. And if that perspective iswhat it takes to get to the root cause of diseases like IBD, then shareholdersand market forces be damned.
 
 
That is what "filling unmet medical needs" is—or shouldbe—all about. Be well, sis.

Amy Swinderman

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