Patients Tell Their Stories in Consortium of Multiple Sclerosis Centers’ Online Videos
Maryland special education teacher Ingrid Hanson says that since she was diagnosed with multiple sclerosis five years ago, she’s developed a better understanding of her students’ needs and the importance of teamwork.
Flavia Nelson, an MS specialist at the University of Texas in Houston, contends that socioeconomic and cultural barriers — especially among Hispanics — prevent better outcomes in MS.
Cathy Chester recalls the journal she kept as a child, how she dreamed of becoming a writer, and why extreme numbness in her hands and feet led her to an MS diagnosis in 1986 — and eventually to a New York center where she finally got the specialized care and emotional support she needed.
The three are among 20 people featured on video presentations that form the backbone of MS Teamworks — a new resource in which patients, doctors, and care partners share their stories online.
“We wanted these conversations to be more than lectures, and to make them accessible,” June Halper, CEO of the Consortium of Multiple Sclerosis Centers, told Multiple Sclerosis News Today in a phone interview.
The consortium, known as CMSC, is a leading educational, training and networking organization for MS healthcare professionals and researchers based in Hackensack, New Jersey.
Halper said the MS Teamworks project — which has been in the works for a year — is based on the popular TED talks.
“What we did was engage a number of people with MS as well as families and professionals to have a brief 14- to 18-minute conversation about specific topics,” she said. “Each one has a theme: being a mother with a child and having MS, or being a young man with a disease not common in men and trying to continue a career.”
The German pharmaceutical EMD Serono funded MS Teamworks. The company, a division of Merck KGaA, didn’t disclose the dollar value of its grant, which it has renewed for another year. The renewal will allow CMSC to add more videos to the website it developed with its partner, Catamount Medical Education, Halper said.
“Even the healthcare community needs more of a conversation about the disease in short periods, rather than hours and hours worth of education,” she said.
MS Not a Death Sentence, Patient Says
Hanson, the special education teacher, works with children at Lindale Middle School in Linthicum, Maryland. The 34-year-old was diagnosed with the relapsing-remitting form of the disease in February 2012.
She recalls laughing when she read an email that asked her to participate in the video project.
“I don’t even like having my picture taken, so initially I was not going to do it,” she said. “But my fiancé convinced me.”
Hanson said she hopes the project gives people insight into a disease that’s frequently misunderstood, by both patients and those around them.
“Until I was diagnosed, I had no idea what MS was or how it impacted people,” she said. “And when I took off from work, people would say, ‘She looks like she’s healthy.’ They don’t understand.” She added: “It’s not a death sentence, and it’s not going to significantly impact your life unless you have the progressive kind.”
Neil Schulman, also 34, agrees. A resident of Hoboken, New Jersey, the software sales and marketing executive learned he had MS in April 2015 after suffering constant eye problems, fatigue and a sudden loss of feeling in his right leg.
“One of the things that helped me when I got diagnosed was knowing other people who had it,” he said. “By sheer coincidence, the person I sat next to at work has MS. Through the course of the next couple of months, I found there were a lot more people who knew somebody with MS too — a brother, a husband, or a wife. These people who had MS were totally fine, but that’s because we’re on medication that can cost upwards of $15,000 a month.”
Schulman said he had seven or eight relapses before his initial diagnosis. He had another one a year later before going on Biogen’s Tysabri (natalizumab), an intravenous treatment that the U.S. Food and Drug Administration approved in 2004.
“I’ve now been on Tysabri for 15 months, I’ve had no relapses, and I’ve never felt better,” he said. “Before, it was affecting my ability to work, and now I’m able to live my life as though I didn’t have MS.”
Halper, who’s been with the consortium since 1992, has her own video, “Debunking Myths and Misperceptions” about the disease.
“There are many common myths about MS, like ‘You’ll end up in a wheelchair no matter what you do,’ or ‘Women with MS shouldn’t have babies.’ That myth was debunked a while ago,” she said. “Another was that it’s genetic, that it runs in families. While some families do get it more frequently, it’s not hereditary. Or, ‘If you go on a special diet, you can get MS to go away.’ There’s no such thing.”