More help is on the way for the estimated 10,000 to 12,000 Southern Nevadans with multiple sclerosis.
Patients and caregivers can talk to health and lifestyle experts about strategies for coping with the neuromuscular disorder Saturday at Lights, Camera, Take Action on MS. Southern Nevada service providers also will be available at the event, which features actress Madeleine Stowe, who will tell how she helped take care of her father when treatment options were limited for his MS.
Stowe’s father, Robert, struggled with symptoms from the time she was a preschooler, progressively getting worse through her adolescence and early adulthood. Her goal for the Saturday event at the Renaissance Hotel is to raise awareness so that no patient or family has to endure the same ordeal.
“It was very rapid and very difficult for him,” Stowe said by phone Tuesday. “He ended up having a lot of complications: memory loss, tremors.”
She was approached by the pharmaceutical company Genzyme to be its paid spokeswoman, and she was convinced she could help others though retelling her story forces her to recall difficult memories. Her father lived with MS for 20 years and died before the first medications became available in the early to mid-1990s.
“I’ve met patients who have been living with this disease for a lot longer who are ambulatory, who walk around,” she said.
Angela VanBrackle of the National Multiple Sclerosis Society serves about 2,500 people in the Las Vegas area, putting on exercise programs, facilitating support group leaders and offering direct services such as help around the house and physical therapy. Newly diagnosed patients often don’t know where to turn for help.
“If you’re trying to find a neurologist or other service provider, it can be overwhelming in terms of insurance and what’s on the Internet,” VanBrackle said. “We try to take as much of the stress out of the process as possible.”
Dr. Le Hua at the Cleveland Clinic Lou Ruvo Center for Brain Health addresses the neurological, rehabilitative and mental health needs of patients in downtown Las Vegas. The director of the Ruvo center’s MS program went through a fellowship to specialize in MS care, and the center is poised to hire a similarly trained physician this summer. The Ruvo MS program was helped by a donation last year from singer Gloria Estefan, whose father, Jose Fejardo, died of MS.
MS patients also have been treated at the Nevada Neurosciences Institute at Sunrise Hospital, but no new patients are being accepted at this time. Dr. Gabriela Gregory, a Sunrise neurologist, said the hospital is recruiting a neurologist with the goal of hiring someone specialized in MS care.
Other hospitals coordinate services with nearby clinics. The doctors at Las Vegas Neurology Center in the Las Vegas Medical District are on staff at Valley Hospital so patients experiencing an exacerbation of their symptoms benefit from a continuity of care.
“When our patients end up in the hospital, they will see the same doctors familiar with their personalized disease process,” Dr. Paul Janda said.
Just 23 years ago, no medications had been approved for MS. Since then, 13 medications have been approved to treat the disorder in which the immune system eats away at the protective covering of nerves. Hua says diet, exercise and other therapies also can help improve quality of life for patients.
“We know the value and importance of exercise,” Hua said.
“It would be a stretch to say the right diet can change your MS, but I think the right diet can make you feel better, which means your disease will have less of an impact.”