MS clinic focuses on treatment of whole person
A feeling of dread swept over 31-year-old Alyce Glazer Levy as her physician conveyed the sobering news: She had multiple sclerosis.
"All I could think was, 'My life is over. My husband is going to be alone. We will never have children,'" she said. She had been married a year.
Mrs. Levy was unaware of recent strides in the treatment of the disease until she became one of thousands of MS patients from across the country referred to UT Southwestern's multiple sclerosis clinic. During her initial appointment with Dr. Elliot Frohman, associate professor of neurology and ophthalmology and director of the clinic, Mrs. Levy understood for the first time since her diagnosis that life could go on.
"On my first visit, he encouraged me. He told me to continue living my life - to keep exercising and to have children if I wanted to," she said. "Being treated is not just about getting medicine; it's about how this illness affects the quality of life, and doctors at UT Southwestern understand that. They don't just treat one thing. They treat the whole person."
UT Southwestern's multiple sclerosis clinic is among the largest in the world dedicated solely to MS treatment and research and is home to the nation's only federally sponsored MS physicians' training program, which has trained more than 300 neurologists and neurology residents from 46 states since its launch in 2001.
As of this fall, it has expanded and relocated to Professional Office Building 1 at St. Paul University Hospital.
Demand for appointments in the comprehensive clinic has increased rapidly in recent years as UT Southwestern has become increasingly recognized as a leader in the treatment of multiple sclerosis. The center combines leading-edge clinical research with training and therapies including wheelchair use, bladder and bowel management, and vision and psychiatric screenings.
"People who live with multiple sclerosis deal with all sorts of different issues," Mrs. Levy said. "It helps a lot to have all these treatments available in one location."
Multiple sclerosis is the most common disabling disease of young people age 18 to 45. During progression of the disease, the fatty tissue that surrounds and protects nerve fibers of the central nervous system degrade, halting the ability of the nerve to conduct electrical impulses and leaving scar tissue, or lesions, on the brain. Symptoms are unpredictable and may include severe vision problems, abnormal fatigue, loss of balance and muscle coordination, slurred speech, tremors, stiffness, or bladder problems.
UT Southwestern's training program for physicians was launched two years ago after Congress approved its initial funding. During the weeklong course at the National Training Program for the Comprehensive Care of Individuals with Multiple Sclerosis, neurologists and neurology residents observe doctor-patient interaction, work through various treatment scenarios and take assessments exams.
The effects of the training program can be seen across the nation. After taking the course in summer 2002, Dr. Joseph Guarnaccia, a private-practice neurologist who has specialized in the treatment of MS for a decade, was able to return to his East Coast clinics with ideas for new therapies and a greater appreciation of the advanced rehabilitation needs of patients.
"This program really helps guide physicians in terms of developing, understanding and testing new therapies," said Dr. Guarnaccia, former director of the Yale University School of Medicine MS clinic.
"I also gained a greater awareness and appreciation of the rehabilitation needs of patients - about things that are not often talked about in the office, like sexual function. You're dealing with different specialties like urology and ophthalmology, and sometimes the different specialists don't talk to each other enough."
Physicians and patients alike say they are impressed with the amount of time Dr. Frohman spends with patients.
"He clearly has a very strong clinical presence, and that's not easy to do when there are a lot of demands on your time for travel, for writing, and for speaking," Dr. Guarnaccia said. "This training program really gives UT Southwestern a national reach, because you have physicians coming from all over the country all year long, and these doctors all go back and try some of the things he teaches."
UT Southwestern's MS team is com posed of 45 doctors, researchers, postdoctoral fellows, an imaging phy sicist, physical therapists, nurses and support staff. They work to induce a period of remission in the early stages of the disease by using a combination of drug therapies.
Dr. Kathleen Hawker, assistant pro fessor of neurology, and Dr. Michael Racke, associate professor of neurology, are currently conducting a clinical trial to treat patients with primary progressive multiple sclerosis - a form for which no treatment currently exists. Physicians in the MS clinic are also working to develop new drugs that can be used in combination with current drugs in order to enhance treatments.
"We really believe in the next 10 to 20 years we at UT Southwestern have the opportunity to influence and facilitate the intellectual pipeline for the treatment of chronic neurological disorders," Dr. Frohman said.
Mrs. Levy, who is now 34, said com ing to UT Southwestern brought about a turning point in her illness.
"More than anything, it was about my attitude," she said. "Dr. Frohman was very honest with me. He told me I had a good prognosis, and that made me feel like I could continue to live my life and experience happiness and look forward to things. I felt very taken care of."
Two years after her diagnosis, Mrs. Levy and her husband had a child, Jordan Clair, who is now 6 months old. Looking back on the last three years, she credits not only Dr. Frohman, but the entire clinic staff with helping her gain a more positive perspective about her illness.