‘Imagine My Life’ Video Series Gives Voice to Realities of NMOSD

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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The video series “Imagine My Life With NMO” has been launched by the Sumaira Foundation to help others in understanding what daily life can be like with neuromyelitis optica spectrum disorder (NMOSD).

In the series, Sumaira Ahmed, the European foundation’s creator and a NMOSD patient, interviews other patients, their loved ones, and clinicians to explore the realities of living with the disorder.

The effort is part of the Sumaira Foundation’s initiative to expand NMO awareness month, celebrated each March, so that it is recognized worldwide.

“The episodes unveil the realities of diagnosis, treatment, and learning to live with this rare disease. The purpose of this series is to elevate awareness of neuromyelitis optica to a wider audience and shed light on the disease and its patient community,” the foundation stated in announcing the series.

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Making Every Second Count While Waiting for a Miracle

Episode one, now available, follows Ahmed as she interviews Matthias Fuchs, an NMOSD patient and automotive industry  engineer living in Munich, Germany.

Fuchs, who experienced his first symptoms in 2010, was diagnosed with NMOSD — an autoimmune disease of the central nervous system (brain and spinal cord) — in 2012 after repeat visits to doctor’s offices.

“With each examination, another piece of the puzzle was added to my clinical picture,” Fuchs said in the roughly 16-minute video. “And so after about half a year and various diagnoses, the word NMO, neuromyelitis optica, was in the room.”

While the road to a correct diagnosis was long, Fuchs considers himself lucky to have had a doctor who knew about NMOSD, adding, “I believe that this is really the absolute exception to the rule.”

But Fuchs thinks newly diagnosed patients have reasons to be optimistic. “It makes me feel more and more positive that more and more information is becoming easily accessible that is … easily understandable for a non-medical person,” he said.

Despite the challenges accompanying the disease, Fuchs feels supported by those around him, especially his wife. “She’s simply the most important person in my life,” said Fuchs, who now relies on a wheelchair but continues to enjoy his favorite hobbies — traveling and cars.

“Of course, the disease takes away a lot. But humans are always able to adapt to their situation,” he said.

Fuchs was recently appointed as the German ambassador to the Sumaira Foundation. He hopes to use his role to blaze a “fresher path” for those living with the disease.

“I think there is a very large group of younger patients who would like to be very open about their condition,” Fuchs said. “That takes an incredible amount of courage to go out and say, ‘here I am, the way I am.’ I want to participate in this society, in this life, even though I have this disease.”

The video series is produced by Heartwork Productions, with support from Horizon Therapeutics, which markets the approved therapy Uplizna (inebilizumab-cdon) in Europe and the U.S.

As part of NMO awareness month, the Sumaira Foundation also encouraged people with NMOSD in the U.S. to share their stories as part of the “NMOSD Won’t Stop Me” initiative.