Neuromyelitis optica SPECTRUM DISORDER (NMOSD)

FAQs on NMOSD

  • What is NEUROMYELITIS OPTICA SPECTRUM DISORDER?

    Neuromyelitis optica spectrum disorder (NMOSD) is a rare disease of the central nervous system. The incidence and prevalence of NMOSD are dependent on geographical location and ethnicity. Asians and those of African ancestry are at increased risk.

    The name explains the areas of the central Nervous System that are commonly affected: the Optic Nerve and the Spinal Cord. Inflammation of the OPTIC Nerves is called OPTIC NEURITIS. Inflammation of the spinal cord is called MYELITIS. Other symptoms include bouts of intractable vomiting and hiccups.

  • WHY SPECTRUM DISORDER?

    Up to 70% of patients with NMOSD develop antibodies against Aquaporin 4 (AQP4), a water channel present in certain cells within the Central Nervous system (CNS). AQP4 is widely expressed in the brain, spinal cord, and optic nerves. The diagnosis of SEROPOSITIVE NMO is established in patients with clinical evidence of inflammation in the optic nerves, spinal cord or other areas of the CNS in which antibodies against AQP4 can be measured in blood.

    A small proportion of patients with clinical features of NMOSD do not have antibodies against AQP4. In that case, a diagnosis of SERONEGATIVE NMO is established. NMOSD is a term that was coined to include seropositive and seronegative NMO patients.

Meet Sumaira

Prior to her illustrious career in healthcare and hospital administration in Boston, Sumaira worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia. Sumaira is a classically-trained Kathak dancer and has performed in prestigious venues including Madison Square Garden, the Kodak Theatre, Santiniketan, and the Rudolf Steiner Theatre. 

In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD) after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF) dedicated to generating global awareness of NMOSD and MOGAD, supporting research to find a cure, patient advocacy, and creating communities of support for NMOSD and MOGAD. 

In 2015, Sumaira was crowned the 1st Miss Bangladesh-USA advocating for equal opportunity education for Bangladeshi children in efforts to increase tolerance and strengthen the country’s international presence, economy, and infrastructure. 

In September 2021, Sumaira was honored with WEGO Health’s “Best Kept Secret” Award recognizing her advocacy work in rare disease. 

In October 2021, Sumaira was featured in a Wall Street Journal article about Medicare’s drug-pricing debate. In 2022, Sumaira was prominently featured in an Emmy Award-winning show, Medical Stories, on PBS. You can watch the full episode, NMO: Blindsided Within here: https://youtu.be/UoYri5CDftI

how is the diAGNOSIS OF nmosd MADE?

Listen to Dr Miravalle explain the process of diagnosis of NMOSD, how NMOSD differs from MS diagnosis, along with a historical review of the evolution of NMOSD over the last decades.

Let’s explain AQP4 antibodies

Dr. Augusto Miravalle discusses and answers live questions about the NMOSD antibody, AQP4 (aquaporin-4). This programming was developed by The Sumaira Foundation and was made possible by a patient education grant from Horizon Therapeutics

Want to Learn more?

Want to Learn more?

REGISTER to the NMOSD Brain Health Program

  1. Please fill out the form provided

  2. We will email you to confirm your participation few weeks prior to the start date

  3. Attend for free!

DATES FOR 2024:

Each Program consist of 6 sessions scheduled in 2 consecutive weeks. The sessions are virtual on TUE, WED and THU from 5:00 to 6:00 PM (MST)

October 2024 OPEN

NMOSD BRAIN HEALTH PROGRAM

PERSONALIZED EDUCATION IN A SMALL GROUP SETTING

The NMOSD Brain Health Program was developed to empower individuals through knowledge and experiential learning on evidence-based best practices proven to improve Brain Health.

During the 2-week Brain Health Program you will learn ways to take control and adopt life-style interventions aiming to maximize your Brain Health Potential.

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