Alexion Pharmaceuticals, AstraZeneca’s rare disease unit, shined a light on neuromyelitis optica spectrum disorder (NMOSD), a severe neurological disease, in a short film that debuted Thursday.
While not many have the disease, NMOSD is painful and can have lasting consequences. A text descriptor in the beginning of the film notes that an unexpected relapse of this disease can lead to permanent disability like vision loss or paralysis.
Currently, there is no cure for NMOSD and treatment options consist of intravenous high-dose corticosteroids (methylprednisolone) to reduce nervous system inflammation or plasma exchange to handle severe attacks.
The continued investment and research of new therapies for NMOSD has offered hope to patients, caregivers and providers alike. Since 2019, the Food and Drug Administration approved the use of four medications to treat NMOSD.
Still, the path to diagnosis is often long and arduous, with NMOSD frequently being misdiagnosed for other conditions.
Launched on YouTube, Rare Connections in NMOSD seeks to raise awareness of the film through testimonials of three patients living with the rare inflammatory condition.
The film’s participants – Craig, Alexandria and Marie – were all asked to pen a letter describing their experiences living with NMOSD and read one another’s in front of the camera.
For Alexandria and Marie, their symptoms began in their teenage years with pounding headaches and stabbing pains in their eyes. Ultimately, both patients became blind due to the disease.
Craig, meanwhile, suffered from headaches in his 20s that prompted his girlfriend to tell him he needed to go to the emergency room to receive care.
What all three patients share are challenges navigating the healthcare system, including being shuffled between doctors and specialists as well as not having their concerns fully heard when expressed.
The patients repeatedly emphasized the value of their family acting as caregivers throughout the course of the disease and also underscored the value of community in the rare disease space.
“I am grateful to be involved in the strong community of people living with NMOSD,” Alexandria said.
“Just having that connection is just so powerful,” Marie added
The film concluded with a special thanks to Alexion’s partners for supporting the NMOSD community, including the Guthy-Jackson Charitable Foundation, the Siegel Rare Neuroimmune Association and the Sumaira Foundation.
