Mother-daughter team join on crusade to cure Crohn’s

Last Updated on Friday, 25 July 2008 12:20 Wednesday, 02 May 2007 06:34

Written by Paul Scott Abbott

Throughout her distinguished career as an elected public servant from Hollywood, Eleanor Sobel has been an advocate for numerous health-related causes, but efforts to find a cure for Crohn’s disease are especially close to her heart.

Emily Sobel with her
mother Elenor Sobel

Sobel’s 32-year-old daughter, Emily, is among some 500,000 North Americans stricken with Crohn’s, a digestive tract affliction that can be as gut-wrenching emotionally as it is physically.

“I’d like to find a cure for this disease and that there be hope for all people who are living with it to be as functional as they can possibly be and live a life of good health,” said Eleanor Sobel, who is beginning her first term on the Broward County School Board after eight years in the Florida House of Representatives, preceded by six years on the Hollywood City Commission.

Emily Sobel, who joined family and friends in Broward last month for a charitable walk-and-run event, commented, “My ma saw what the illness could do to a young person and got involved.”

For the Sobels, involvement clearly has gone beyond the mother-daughter context. While the mother has championed such actions as Florida’s first Crohn’s and colitis research act, daughter Emily has provided written testimony to legislative committees and taken part in various research studies and surveys.

On the Sunday morning of April 22, Emily was joined by her mother, father Dr. Stuart Sobel and other members of the “Sobel Steppers” team at the Crohn’s & Colitis Foundation of America’s Florida Guts & Glory Walk/5K Run at C.B. Smith Park in Pembroke Pines – an event that raised some $100,000. In prior years, the Sobels had taken part in similar events at TY Park in Hollywood, but the location shifted this year due to construction at the Emerald Hills park.

Emily Sobel believes the disease has actually brought her even closer to her mother.

“We’ve always been close and always found each other very easy to be around, but, as an adolescent, it showed me that, even as a tough kid, you need your parents,” Emily Sobel said. “It’s been a humbling experience.”
Emily Sobel was 20 years old, in the summer of 1995, between her junior and senior years at Yale University in New Haven, Conn., when she began noticing stomach pain and weight loss. At the time, she was working on her senior thesis in art history while holding down jobs in the Yale art history slide library and at a campus dining hall. Initially, she thought the cause of her agony was a muscle pulled while lifting stacks of food trays at the dining hall.

“I became skinnier and skinnier and worse and worse and kept ignoring it,” she said, noting that a trip to the student clinic did not yield a proper diagnosis.

After her parents realized the potential severity of her distress, they got on an airplane to Connecticut and flew her back with them to Hollywood.

By the time the Crohn’s diagnosis was made in September 1995 by University of Miami doctors and she was placed on the corticosteroid drug Prednisone, Emily Sobel had lost 35 pounds. She also had seen numerous doctors, undergone a slew of tests and been presented with a host of diagnoses. Diagnosis was complicated by the fact that her X-rays did not reflect a pattern typical for Crohn’s sufferers.

“I was a little bit oblivious to all that was going on and all the diagnoses my parents tried to shelter me from,” she said.

Her father, a distinguished dermatologist, served as her “research arm,” while her mother was “the more emotive arm,” she said.

“My ma literally walked me through the first steps of the illness,” Emily Sobel said. “We took slow walks around the block and then, when I got more strength, we walked around TY Park.”

Emily Sobel wound up missing a semester but still graduated as scheduled from Yale in 1996 with a bachelor’s degree in art history. In 2001, she earned a master’s degree in architecture from Columbia University in New York and now works as a project manager in the New York office of the global Gensler architectural firm.
Emily Sobel said she believes she has been fortunate – both in the fact that her condition has stabilized and in the support she has gotten from her family.

She has had to undergo one surgery – a small intestine resection in 2000 at Mt. Sinai Hospital, the same New York hospital where she was born prior to moving with her parents to Hollywood at age 2. Mt. Sinai also is where her father completed a medical school residency in the 1970s and where, in 1932, gastroenterologist Dr. Burrill Bernard Crohn first described the disease that now bears his name.

A key to Emily Sobel’s current relative health is a drug called Remicade or, generically, infliximab. The drug acts within specific cells to dramatically reduce flare-ups of Crohn’s, an autoimmune disease for which a cure has yet to be found.

Every four to six weeks, Emily Sobel has to go to a hospital for intravenous infusions of Remicade. Fortunately, her health insurance covers 98 percent of the $12,000-per-infusion cost.

“This drug is an absolute miracle, with no side effects,” she said, noting that she still periodically suffers from stomach pains, digestive problems and occasional related arthritis.

“There’s a real need for people to rely on each other and know that there are always new and better medicines coming,” Emily Sobel said, “and, until then, you’ve got your family’s support. That has made it so easy for me.”

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