The NMO Community We Have Been Waiting for Is Here
For far too long, many who contend with neuromyelitis optica spectrum disorder (NMO), whether their diagnosis was known or unknown to them, have done so lacking the resources they deserve. They have fought against systems that doubt them. They have battled debilitating and terrifying symptoms, all while too often being dismissed, overlooked, and contested by those who are meant to help and heal them.
With the incredible work from foundations, organizations, and spaces dedicated to furthering awareness of and providing resources for folks who contend with NMO, coupled with the launch of neuromyelitis-optica.net, that begins to change.
Who we are?
Neuromyelitis-optica.net is an online community created by, for, and with you. It is our intention to craft a vibrant and resourceful space where you can come to seek and give information, support, camaraderie, and so much more.
The content you will see published on our site was created in large part by our advocates, who are either living with NMO or whose lives are touched by NMO. We also publish content created by our expert Editorial Team, who analyze and interpret important clinical information to make it easier for us to understand.
Let us talk about our shared goals
We want to emphasize that this community was created with you in mind. Together, we will actively work to make information, support, and resources for folks living with NMO more accessible. We will also work to influence the NMO space in such a way that the lives of our community members, both present and future, are improved.
Let us get diagnosing NMO right
It is an inconvenient truth: NMO can be difficult to diagnose. The symptoms associated with the onset of NMO can be broadly interpreted, and too often written off as being relatively harmless. These include eye pain, headache, neck or back pain, fever, and being sensitive to the touch.
Nearly everyone we have spoken with as we launched this community has journeyed down a long and winding road that, perhaps years later, led to an accurate diagnosis. Too many are initially diagnosed with and treated for multiple sclerosis, which can actually be harmful to someone living with NMO. Others first felt dizzy, which they identified as vertigo, or suddenly woke up blind, which was too often attributed to other conditions like diabetes.
Let us raise awareness
The first step toward changing the course of NMO diagnosis and treatment is raising awareness. One of our goals is to help lift your voices in concert with the chorus of many who work tirelessly to dispel mistruths about NMO and bring the facts to light. Awareness needs to be raised on all parts: for people with NMO, doctors, and the world at large.
Let us be an enduring resource
We are here to help. Whether you are looking to arm yourself with factual information, seek or offer support, access resources, or educate others, we are creating a community that will enable you to do all that and more. As time goes on, and as more people contribute their stories, perspectives, and questions, our community will become increasingly robust and substantial. We are building a community for today and tomorrow.
The bottom line?
An online community made for, by, and with you, someone whose life is touched by NMO is finally here! We are so excited to be able to welcome you!
Let us start here!
What do you hope to see from this new NMO community? Tell us in the comments.
How well do you feel your doctor understands your NMO?