After months of preparation with storytelling experts, three ordinary Americans with multiple sclerosis (MS) took the stage in New York late last year to share their MS journeys.
The three joined TV personality Montel Williams at an event inaugurating My MS: Second Act, a joint effort co-sponsored by the Multiple Sclerosis Society of America (MSAA), Novartis, and The Moth, a New York-based nonprofit organization.
“Storytelling is the stuff of life, and there is so much power in not only telling your own story, but in listening to other people’s stories,” said Amanda Montague, MSAA’s vice-president of education and healthcare relations.
Williams said both Novartis and MSAA have “worked as hard as they can” — along with The Moth — to help MS patients tell their own personal stories.
“In doing so, it’s important that you share those stories with as many people as you possibly can, because hope should be the mantra of the day,” he said. “Yes, this disease is going to progress, and 80% of people with RRMS [relapsing-remitting MS] will end up with SPMS [secondary progressive MS]. It’s going to happen, but that doesn’t mean our SPMS will be the exact same as someone else’s,” he said.
“We still have abilities, even if that walker doesn’t work anymore — even if it’s just one finger,” Williams said. “Remember, as much as medication and doctors and treatments can help, I’m a firm believer that the love you get from those around you is just as powerful.”
Leverne Marsh, vice-president and head of the U.S. neuroscience franchise at Novartis, added: “We all have a role to play. For us at Novartis, in partnership with MSAA, we must do our part to elevate patients’ stories as frequently as we need to, and as frequently as the opportunity will allow. Many MS patients feel socially isolated, that they don’t belong anywhere, that nobody is listening. But there’s incredible optimism and resilience here.”
Karen’s story: Empowerment
In 1996, Karen B. was a happily married woman with a full-time job and an inquisitive 3-year-old daughter named Amy. Then, one day, she rubbed her eyes and it hurt.
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