What It Means to Raise Awareness for Rare Conditions
For the last decade and then some, life has challenged me in a way I could have never predicted. I was diagnosed in 2005 with myasthenia gravis (MG), a rare neuromuscular disease that in short, causes extreme fatigue and weakness. While the prevalence ranges from 1 in 2,500 to 1 in 200,000 people, it still seemed to barely be on anyone’s radar, including medical professionals. Prior to my diagnosis, I was living with symptoms that could have been applicable to many disease-states, one of the main reasons I was not only misdiagnosed but misunderstood for approximately two years. This MG journey I was forced to embark on, is a dare that continues to push me into the unknown daily, and a truth that tests the essence of my being regardless of my acceptance of the disease.
June is myasthenia gravis awareness month, and one of my primary missions in my professional and personal life since living with this diagnosis is to invite people to become aware — particularly as it pertains to disability, chronic illness, rare disease, and invisible disabilities.
This sounds simple, I know. One may say, “Yes, I know these things exist, therefore I am aware.” Yet, if it were that straightforward, those who manage an illness or disability daily would be living a life free of discrimination, bias, judgment, ridicule, and shame.
Awareness is more than recognition of existence. Awareness, in my opinion, is being able to acknowledge the existence of something like physical adversity and to try and comprehend the type of impact it can have on an individual’s life.
Awareness, however, is not necessarily the ability to understand something to its core. That’s why I believe myasthenia gravis is the perfect example to illustrate awareness. Researchers have identified the disease without necessarily fully grasping its etiology. And although it is rare, it has affected enough people to where we can say its presence in people’s lives can have drastic effects.
What I just described above may sound like a minor tweak in terminology, but believe me when I tell you that being able to distinguish the two-fold definition allows a community to cultivate compassion, consideration, and clarity in a confusing world.
Let’s not be fearful of something that is complicated, foreign, or different from what we may be used to. Instead, let’s fortify the opportunity we all have to embrace diversity, and appreciate everyone’s individual truths and dares that make a forever impression on how we live our lives.