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Crohn’s a very personal disease
July 2012
by Amy Swinderman  |  Email the author
SHARING OPTIONS:

The Summer Solstice came and went while we were preparing this issue, and beyond my office window, children frolicked under sprinklers in their backyards and cheerfully rode their bikes across sun-dappled sidewalks.
 
Summer was always my favorite time of year as a kid, giving me a much-needed break from my honors-program studies to write, play and indulge my overly active imagination, with the exception of one worry-filled summer around my 10th year—a time I found myself reflecting on this month after interviewing the folks at the Crohn's and Colitis Foundation of Canada (CCFC) and Vertex Pharmaceuticals Inc. (see story, "Probing the bowels of disease").  
 
That summer, my mother packed up my two younger siblings and I, and we temporarily moved into the home of my older sister, Selina—known affectionately to everyone in my large family as "Nina." Nina is about 17 years my senior and the oldest of the seven children in my family. By the time I was born—kid number five for my parents—Nina was starved for a sister, and spent many hours playing with me in her bedroom, introducing me to the 1970s rock songs 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'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— but Crohn's sometimes kept Nina from playing with her children or going to work, and periodically, it put her in the hospital for long stretches of time.  
 
The summer of my 10th year was one of those times. When steroids failed to suppress Nina's flare—the word "prednisone" became part of my everyday vocabulary pretty early on—she went into the hospital for what would end up being one of the first of many surgeries. And because her three children were very young—one still in diapers—we moved in with them to help take care of them during their mother's absence.  
 
I don't know how my mother did it, considering she had three children 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 is infamous. We did our best to keep the kids occupied, entertained and cool as my mother helped my brother-in-law manage the house and made visits to the hospital.
 
I remember being surprised that my nieces and nephew were so adaptable to the situation. But you see, from the time they were babies, Nina fought to live as normally as possible with her disease. It was always a part of 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 and have 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 the generation of patients who served as guinea pigs for the limited treatments that are available, which presently address only some of the symptoms of inflammatory bowel diseases (IBD).  
 
So when I had the opportunity to talk to the people at the CCFC and Vertex about their efforts to better understand the biology and genetics of Crohn's, I jumped at the chance. These people and their academic colleagues understand what the experience of my 10th summer was all about—a patient succumbing to the terrible effects of IBD, and the impact it can have on her family. For some drugmakers and researchers, finding treatments for unmet medical needs is all about numbers: how many people suffer from it, how many treatments are available, how much commercial opportunity is available and how 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 is what it takes to get to the root cause of diseases like IBD, then shareholders and market forces be damned.  
 
That is what "filling unmet medical needs" is—or should be—all about. Be well, sis.

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