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Crohn’s a very personal disease
July 2012
SHARING OPTIONS:
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.
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.
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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