All About Multiple Sclerosis

More MS news articles for June 2004

Vero Beach woman founds non-profit for MS patients

http://www.tcpalm.com/tcp/health_and_wellness/article/0,1651,TCP_1040_2944716,00.html

June 8, 2004
Tonya Alanez
TC Palm

Lisa Patton didn't think she had a story to tell.

Sure, she had lost and regained her eyesight, chased an elusive diagnosis for four years, and done this while raising a family and working full time.

But Patton, 41, saw her condition as a "non-issue."

Until she joined the Vero Beach-based Sand Dollars Multiple Sclerosis support group and started to listen.

"Everybody was sharing and telling stories," Patton said of the first meeting she attended in January 2003. "It's the best thing that's ever happened to me as far as realizing what I have and where I could be."

The group explores how patients with multiple sclerosis -- a degenerative disease of the central nervous system -- and their caregivers and relatives cope day to day.

"It's very hard to do it alone," Patton said. "We rely on other people to help us. To know that there's somewhere to go besides family members to get support is key."

Patton and others are beneficiaries of a dream imagined by Vero Beach resident Robin Williams, herself diagnosed with MS six years ago.

From her own experience, Williams, 51, saw that MS patients had to run from one place to the next to meet all of their treatment needs, ranging from MRIs to appointments with urologists, psychologists, gynecologists and ophthalmologists.

"These patients do not receive the comprehensive care that they should," Williams said. "The care was all over the board."

She suspected the need for focused, one-stop care was a statewide, if not a nationwide problem.

The MS Centers of Florida Foundation, established in 2001, is Williams' brainchild. She is founder and chairwoman of the non-profit organization, which oversees a chain of comprehensive-care facilities and connects a network of MS doctors with patients across the state. The Sand Dollars support group is one aspect of educational outreach the foundation provides.

For Patton, it has been a lifesaver.

"Each doctor was sending me to different doctors," Patton said of her early treatment. "If you took a map and pinned all the places I had been to, you would fill up the board."

When the foundation got under way, all that began to change.

The foundation, headquartered at 1655 27th St., takes part in clinical research, but mainly focuses on providing comprehensive care for MS patients. It was borne out of Williams' relationship with her doctor, S. James Shafer.

Biogen-Idec pharmaceutical company, the Boston-based maker of Avonex, the most commonly prescribed MS therapy worldwide, provided a significant amount of seed money to get the foundation started. But it largely subsists on donations, the majority of which come from family and friends.

Since the birth of the foundation, a statewide network of physicians dedicated to MS has evolved. There are now 10 physicians at seven centers throughout Florida and Puerto Rico associated with the foundation.

In the small world that is now Florida's MS community, Shafer is also Patton's doctor.

Patton attests to the radical change in the manner of care she received from Shafer.

"He communicated very well," Patton said. "He sat down and talked with you, and he explained things very carefully about MS and what the best course to take was."

She said Shafer adapted her treatment to her lifestyle, bearing in mind that she had two teenagers and a full-time job.

"It's nice to actually have a doctor that's really hip on MS," Patton said. "I feel like I wouldn't be where I am today if it wasn't for him."

A significant part of Patton's treatment is received at the MS Center of Vero Beach, which celebrated its grand opening at a new location south of Indian River Memorial Hospital last month. Shafer is its director.

The center, at 1155 35th Lane, is a state-of-the-art facility, which seeks to offer one-stop compassionate MS care. It includes an on-site MRI, IV-infusion therapy suite, enlarged examination rooms, neuro-diagnostic lab and a physical therapy unit. It is also involved with clinical trials and research.

"We're truly trying to make a difference in the lives of people that have been stricken by this terrible disease," Williams said. "And the reality is, we are."

She said the evidence lies in the feedback she gets from patients.

"When I have a rough day and take two steps forward and six back and somebody calls me and tells me 'you've changed my life,' boy, I'll tell you . . . " Williams said. "The fact that we're able to reach out and help others is so worthwhile that it makes you feel great."
 

Copyright © 2004, The E.W. Scripps Co.