A new survey of patients with neuromyelitis optica spectrum disorder (NMOSD) reveals that, despite many medical and life challenges, they remain optimistic and hopeful for a cure in their lifetime.

The survey results, published in a news release by Health Union, noted that 60% of the respondents participate in online communities for people with the disease.

“With rare conditions like NMOSD, for which resources might be limited, the need for people to find information, support, and connections can sometimes be magnified,” Olivier Chateau, cofounder and chief executive officer of Health Union, said.


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The survey, “NMOSD in America,” was the first of its kind, and it was conducted between January 16 and March 23, 2022, with 61 respondents. The respondents reported specific challenges in terms of diagnosis, with 61% reporting being misdiagnosed; among them, 55% were misdiagnosed with multiple sclerosis.

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Another major obstacle is treatment access, and only one-third of respondents believed that their NMOSD was currently well controlled. Some 30% said cost was a problem in accessing the best treatment possible.

Only 18% of patients said they felt satisfied with their quality of life, and 62% said anxiety and social problems negatively affect them. However, around 50% of the respondents actively seek information about the latest treatments, research, and clinical trials.

More than 60% reported having hope that a cure for NMOSD will be found in their lifetime, and almost 6 in 10 noted that being part of an online NMOSD community was helpful in reducing their feelings of isolation.

Reference

Survey finds people with NMOSD are hopeful, despite obstacles around diagnosis, treatment, quality of life. News release. Health Union; August 11, 2022.