“Treat the patient, not the disease,” said Dr. Kafaie, lead presenter of our latest monthly virtual meet-up. This past Monday the MGA community had the opportunity to sit down with neuromuscular and electrodiagnostic specialist Dr. Jafar Kafaie from Saint Louis University Hospital via Zoom to discuss the highly requested topic, “MG & Aging.” “No two patients with myasthenia are alike,” he reiterated, “They do not have the same fingerprint.” This concept that Dr. Kafaie illustrated is more commonly known to the patient population as “snowflake disease.” Like a snowflake, MG looks different in every single patient. Of course, there are shared symptoms, treatments, and similar journeys with this disorder, however; MG is unique in that the same disease can range in severity, type, approach to treatment, and even location within the body.
As COVID-19 continues to plague the U.S., now more than ever chronically ill individuals are harnessing cyberspace to extend and receive support to and from fellow members within their communities. Social media can be a great tool for this, but it can also be a breeding ground for inaccurate or misleading information. Those who are chronically ill look to others for guidance as it can be comforting and validating to communicate about the shared experience. I have posed questions or responded to others’ inquiries in a few of my communities’ online support groups because I do understand the value it can have when done appropriately. Yet, sometimes these groups can contain material that is informative while other times I think they can be destructive.
What alarms me is when I see others quick to respond to those who are newly diagnosed looking for any sort of answers they can find because as we all know, this disease can be frightening, mysterious, frustrating, and intimidating. People often share their journeys as well as their thoughts, understanding of the disease, and what works for them in managing it. Don’t get me wrong—I encourage solidarity, community, and imparting wisdom about this intrusive disease, but I reckon there is a fine line between spreading helpful vs. harmful information. We are experts in our own right but we must remember to be cautious authorities and audience members when it comes to understanding this disease.
So, let snowflakes fall where they may. Our journeys with myasthenia will all take us to different places, and there is beauty in that. There is also beauty in piling together. We just have to remember to stick together, respecting our unique and delicate presentations of this disease.
#MGA #MyastheniaGravisAssociation #MGADigest #MGStrong #MyastheniaGravis #IHaveHeardOfMG #ChronicIllness #RareDisease #PatientExperience
This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.