Tuesday, February 18, 2014

The comeback story behind "Ally's Law"

Another inspiring piece from Imagine, U Chicago publication:

Patient advocate, spokesperson, fundraiser and law student, Ally Bain has not let inflammatory bowel disease (IBD) stand in her way.

A well-known figure in the IBD community since her early teens, Bain was instrumental in drafting Ally's Law, which mandates restroom access for medical emergencies. The legislation first passed in Illinois and is currently in effect in 15 states. During college, Bain expanded her advocacy work, spreading awareness and raising funds for the Crohn's and Colitis Foundation of America. Now in her first year of law school, she plans to pursue a legal area that includes a public interest component.

"Her resilience in the face of her disease - and what she has accomplished - are an inspiration to her physicians and to many patients," said David T Rubin, co-director of the Inflammatory Bowel Disease Center. Rubin began treating Bain for Crohn's disease in 2005 when she was 15, shy and afraid of doctors. Today, he regularly invites her to speak to patients about IBD, and the two often work together to educate the public and government officials.

NOTHING LESS THAN REMISSION

Bain still remembers what Rubin promised her the first time they met: "You will be in remission within six months." She responded well to infliximab, a biologic therapy that targets an inflammatory protein in the body. Over the past decade, the regular infusion therapy has kept Bain's disease in remission. She continues to see Rubin every four to six months for monitoring.

"I tell my patients to expect nothing less than remission," Rubin said. "And if they are not there, we will keep working on it. We want all of our patients to have the stability and good health Ally has achieved."

Rubin encourages patients to stay informed about IBD and the advances in treatment and research. "The more patients know, the less out of control they feel," he said. Rubin and his colleagues share the latest information about the rapidly changing field through regular community education events and social media.

At the University of Chicago Medicine, patients can expect individualized care for Crohn's and ulcerative colitis as well as access to the latest clinical trials.  On the horizon: a gut-specific biological therapy that targets receptors only in the bowel, reducing side effects.

In addition. to offering innovative therapies and leading-edge technology, the IBD Center ties clinical work to basic and translational research. Studies focus on identifying the causes and understanding the mechanisms behind IBD, the function of the microbiome in digestive diseases, and the role of environment and diet.

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Facts from U Chicago Medical:

Inflammatory bowel disease (IBD) refers to a group of chronic diseases of the gastrointestinal tract,
including:

ULCERATIVE COLITIS
inflammation of the inner lining of the large intestine (colon) and rectum

CROHN'S DISEASE
inflammation deeper into the wall of the small intestine; it may also affect other parts of the digestive system

2001
The first gene associated with IBD was discovered at the University of Chicago.

TODAY
190 genetic variations are known.

The University of Chicago Medicine has about 20 active clinical trials for IBD.


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