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.

Happy Myasthenia Gravis Awareness Month, world!  #AwareofRare #MyastheniaGravis #RareDisease #InvisibleDisabilities #ChronicIllness


Find this story helpful? Share it with someone you care about.


Related to Myasthenia Gravis

A young woman looking up to the sky with autumn leaves falling towards her.

I Am Thankful for My Illness

November may be one of my favorite months; it could be due to the fall foliage and fashion that I adore, but I know there is more to it than that. November is a time that reminds us to be grateful. A time to take a step back and reflect on precious memories and potential [...]
jasmine wearing elmo pajamas

When My Coworkers (Literally) Lifted Me Up After Non-Accessible Spaces Let Me Down

I’m at a manager’s conference for work this week and instead of attending the workshop I’m supposed to be in, I’m in my room laying down. My body can’t keep up with a 12-hour schedule of mostly sitting in hard, straight-backed chairs, so I needed a time out. More problematic than the chairs though is the amount of stairs in [...]

I Stopped Apologizing for My Speech Impairment

For a person whose life and livelihood depended on her passion for the radio, losing my voice due to myasthenia gravis was surely dramatic. With one vocal cord paralyzed, the voice became a whimper. A bell by my side helped me reach out to my family in the other room. Anyone wanting to listen to [...]
A young woman sitting alone on a pier, looking at a body of water.

4 Ways I've Adapted to a Life With Chronic Illness

As someone struggling with a chronic illness, we are sometimes forced to adapt our lifestyles. There are bigger changes, like mobility aids and scars from operations, which are the more obvious ones. And then there are smaller ones. The tiny changes we sometimes make to cope with daily living. Tiny changes that make a big [...]