awareness

March is NMOSD Awareness Month and patients and advocates are planning several initiatives to put a new focus on the progressive autoimmune disease, known fully as neuromyelitis optica spectrum disorder. Affecting more than 25,000 people worldwide, NMOSD is a disorder characterized by inflammation of the optic nerve — the…

Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…

Since 2008, the global rare disease community has observed Rare Disease Day every year on the last day of February. Currently, there are more than 7,000 known rare diseases affecting up to 30 million, or 1 in 10, Americans. In 2017, my youngest daughter, Bella, was diagnosed…

Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year. Feb. 28 (or Feb. 29 during leap…

As I watched actress Selma Blair try to formulate a sentence in her 2021 documentary, “Introducing, Selma Blair,” I couldn’t stop the tears from running down my face. I didn’t mean to watch it alone, sitting in the dark, but I’m glad I did. My heart ached for…

I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…

Words can hurt, especially labels. We can deny a label all we want, but terms like “disabled” will close many doors. What does it mean to be disabled, though? I find the term offensive because it implies I’m not capable, which is far from the truth. Do I live with…

Since the beginning of the COVID-19 pandemic in early 2020, many of us across the country have been doing everything we can to protect those around us and ourselves. I still remember when a federal mask mandate on public transportation was issued in the U.S. at the start of…

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

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…