Did you know that April 7th is World Health Day? The theme this year is, “building a fairer, healthier world.” Ask yourself: what does a fairer, healthier world look like to you?
It’s easy to get caught up in our own circumstances and forget about living in a place where western medicine is the norm. I know I took it for granted. That was until COVID hit.
Countries all across the globe were devastated by this particular virus and I personally was battling some internal conflict about how to feel. At times, I didn’t know what to feel. There were moments of anger, frustration, and upset, yet there were also periods of gratitude, appreciation, and relief. With so much time on my hands, I did a lot of reflecting over the last year and I couldn’t help but notice the uncanny parallel between this life in the era of COVID and life with myasthenia.
Life with myasthenia will produce a wide range of emotions like the ones I mentioned above. There are days when I’m so mad and disappointed because my life has changed so drastically due to this diagnosis. But most of the time I am incredibly thankful for the abilities that I do have, the support system, and the accessible treatments that allow me to live a pretty “normal” life. So, that got me thinking—how can I build a fairer, healthier world? While I cannot tackle the entire universe, I can start small, and in a place I am familiar with: the myasthenia gravis community. Below are a few ways I will be attempting to build a fairer, healthier world and I hope you partake too. Check out the ways I am participating in World Health Day and learn how you can be a part of the solution as well.
I Get by With A Little Help from My Friends
Living with myasthenia is already hard enough, but managing the diagnosis without a strong support system makes things even more difficult. I encourage you to reach out to a fellow individual with MG. Some may not have a solid support system or one at all. Think of a time that someone made the extra effort to check in with you, MG-related or not, and pay it forward by doing that for someone else. A simple phone call or text can change someone’s day in a positive way.
Sharing is Caring
One of the main issues in health equity is the lack of knowledge/access to resources. Do you have a helpful resource that has been a valuable tool in your MG journey? A list of contacts, a medication guide, a device that makes activities of daily living easier? Share these with other MG patients. They may not have access to them or simply don’t even know that they even exist. Speaking of which, check out our latest updated list of drugs to use with caution with a myasthenia gravis diagnosis.
Knowledge is Power
There has been a rapid growth in MG research which means we are closer to having an even better understanding of this disease. Stay up to date on the latest findings regarding myasthenia gravis. Attend a webinar, join a support group, or do your own research. These are all ways you can arm yourself with information and in doing so, you can teach others about your experience living with this disease. After all, educating people about MG is one of the best ways to help others comprehend what it is like to live with this diagnosis.
Another barrier in health equity is the lack of diversity that exists in healthcare decision-making and strategy. More specifically, research in drug development is often critiqued for its history of homogenous participants. Engage in conversation with others who experience MG differently than you. As we know, MG is a snowflake disease and it can impact lives differently for a multitude of reasons. Talk to someone younger/older than you, someone of a different race, or someone with a different MG antibody. Having discussions about the lived experience and comparing the similarities and differences can also be a productive way to build a just world.
Dare to Make Aware
June is myasthenia gravis awareness month; do your part by joining in on some of the awareness activities. You don’t have to do anything grandiose; just wearing an MGA t-shirt or sharing the MGA website on Facebook are different types of awareness methods! You never know what people are going through, and maybe there is someone out there who is fighting MG without your knowledge. Who knows, maybe your neighbor or coworker has MG too. Involving yourself in awareness efforts might be life-changing for those around you.
Happy World Health Day, everyone! Let’s make this world a fairer and healthier place.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator for the Myasthenia Gravis Association.