Orlando walk brings awareness of Crohn's Disease

Crohn's Disease patient leads awareness effort


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  • | 12:22 p.m. April 16, 2014
Photo by: Orlando Takes Steps Walk - A walk to raise awareness of Crohn's Disease and Colitis will march through Maitland.
Photo by: Orlando Takes Steps Walk - A walk to raise awareness of Crohn's Disease and Colitis will march through Maitland.
  • Winter Park - Maitland Observer
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Ed Timberlake didn’t know what was causing his painful abdomen until it was so bad he couldn’t exercise anymore. He was well past the typical age window of a patient sitting in a doctor’s office being told “you have Colitis.” But that’s what it turned out to be.

He’s lived with that diagnosis for the past 25 years. Now after fighting his personal battle, he’s fighting back. The board chairman of Seaside National Bank & Trust was recently named the revenue chair for the Crohn’s and Colitis Foundation’s Take Steps fundraising walk for Orlando.

For the uninitiated, Crohn’s Disease and Colitis are similar conditions that are caused by inflammations of the small or large intestines.

The body attacks normal bacteria that live in the GI tract as if they were invaders, causing painful inflammation, which then becomes chronic.

The diseases are characterized by periodic flare-ups during which sufferers experience painful cramps, embarrassingly urgent trips to the restroom and a myriad of other equally awful symptoms.

There is no known cure for inflammatory bowel diseases. Treatment can range from daily medication regimens and dietary changes to complex surgery when necessary.

The diseases are thought to have a genetic component, an area of research that is actively being pursued in hopes of finding better, more targeted treatment options.

Many people diagnosed with the disease are young, in their teens or early 20s.

Timberlake however, didn’t get an official diagnosis until he was 40.

“I was an active jogger and when my symptoms flared up, I wasn’t able to jog any more. I lost a lot of weight because I just wasn’t able to eat, everything made it worse,” he said.

“ I was 5’10”, 145 pounds, way too thin for me. I didn’t know what was wrong.”

Now on medication, Timberlake feels lucky that his condition is relatively stable with very few flare-ups. He will always have to watch what he eats and will take three pills a day for the rest of his life to control the disease.

“There’s no more ice cream, fatty foods or spicy foods for me, the blander the diet the better,” Timberlake said.

The symptoms of Crohn’s and Colitis are so embarrassing to sufferers; they often avoid telling even family or friends that they are affected by it.

“It is very disrupting to social life, people tend to hide it,” Timberlake said.

The purpose of fundraising walks like the one coming up is not only to raise money for research, but also to offer a chance for people with the disease and those who love them to socialize and share camaraderie, Timberlake said.

“We want to offer an opportunity for people to be more open about this disease and hopefully find ways to better treat it or even cure it.”

One in 200 people suffer from some form of inflammatory bowel disease, as many as 94,000 in Florida alone.

The overall financial goal for this year’s fundraiser is $104,000; so far they have raised just over $50,000.

“One of my goals is to get more companies involved,” Timberlake said. “If you employ 500 people, at least two of them suffer from this disease and you probably don’t even know it.”

“At a time in my life when I am beginning to ease up on my commitments, this one was an easy yes for me,” Timberlake said. “It’s personal for me, so why not?”

It may not be the most glamorous of causes and talking it about certainly isn’t popular, but with enough support, even ugly diseases like Crohn’s and Colitis may someday find a cure.

 

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