By Sheryl Lapidus, Senior Director of Patient Advocacy, HORIZON Therapeutics
What can the experiences of those with NMOSD tell us?
Today, there are over 7,000 known rare diseases, creating a vast community of individuals connected by a common thread. However, each of these individuals is on their own journey, with unique experiences and support systems. This is very much the case for those with neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord and brain. Throughout my time as a patient advocate, I’ve had the opportunity to talk with numerous individuals living with NMOSD who have expressed the frustration and confusion that come from living with a rare disease. From misdiagnosis to navigating education and resources to the struggles of finding the best treatment option, the NMOSD journey is a complicated one that must be better understood in order to ensure that we are doing all that we can to improve the lives of those who are living with this disease and their families.
With that goal in mind, myself and a team of NMOSD researchers from the Instituto Nacional de Neurología y Neurocirugía, Massachusetts General Hospital and Harvard Medical School set out on our own journey to understand the experiences and feelings of those living with NMOSD. We began this exploration by surveying 151 participants, asking them questions on a wide range of topics including symptoms, diagnosis and, more importantly, how individuals felt throughout the course of their NMOSD. Survey responses were representative from people of all ages (<10 to >70 years), ethnicities (86% not Hispanic/Latinx, 8% Hispanic/Latinx, 6% NA), education levels and genders (83% female, 12% male, 5% other). Their backgrounds and responses demonstrated how diverse this community is and helped to set us on the path of determining the common challenges and victories these individuals face every day.
As diverse and unique as everyone’s experience with NMOSD is, common triumphs and struggles became apparent from the survey results. Around initial diagnosis, many of those surveyed felt scared (57%), frustrated (40%) and bewildered (37%). These emotions occur among many people with NMOSD because they may have previously been misdiagnosed and continued to feel an uncertainty with how their lives would unfold following diagnosis. One survey participant shared how their struggles made them feel, stating: “It was hard being diagnosed. I was a month and a half away from getting married. I had always been healthy up until I wasn’t. I had no real medical history. I was so scared of what the future would hold.”
For those with NMOSD, the survey results showed that the journey doesn’t stop at diagnosis, but it does mark an important milestone on the road to improving their daily lives. One of the pivotal moments, according to the survey results, was the transition from a general physician to an NMOSD specialist, with 77% of the respondents feeling relieved after meeting with their specialist. This turning point is not only an important step in improving the physical health of those living with NMOSD, but also their mental and emotional health.
As I look back on these survey responses, it’s clear that a lot of progress has been made in supporting the NMOSD community. As a patient advocate, I’ve seen the great efforts to further NMOSD education among health care professionals, the NMOSD community and the public with the SRNA podcast series, ABCs of NMOSD, and the Let’s NMOwn the Path Forward community, to name a few examples. The community’s efforts, resource centers and social media platforms have already allowed many to find a new way to connect, feel less alone and reduce the uncertainty around what NMOSD means for their future. As we raise awareness of this rare disease, we aim to close the gap between a person’s initial symptoms and their diagnosis, allowing for earlier identification of disease and quicker access to treatments, but more can still be done. That’s why our team at Horizon Therapeutics is working diligently to improve the lives of those with NMOSD every day by going beyond science to work with the community. The path to improving the lives of those with NMOSD is a complicated one, but to follow the words of one of the survey respondents, “I am trying my best every day,” so we will continue to do our best, too, to support the NMOSD community.
Sheryl Lapidus is Senior Director of Patient Advocacy at HORIZON Therapeutics. She is responsible for building partnerships with US and international patient advocacy organizations that support individuals living with NMOSD and other rare disease focused patient advocacy groups.
Prior to joining HORIZON, Sheryl spent more than thirty years focused on the oncology and hematology specialty area. Her experience includes field sales, account management, corporate affairs, and patient advocacy. Sheryl most recently served as Senior Director of Patient Engagement at Viela Bio where she was responsible for establishing the patient engagement department.
Sheryl holds a Bachelor of Arts degree in psychology from the California State University at Northridge and a Master of Arts degree in gerontology from the University of Southern California. She currently lives in Washington, DC. Her hobbies include travel, spending time with her three adult children and her two golden retrievers.