Myasthenia Gravis Awareness Starts With Me
Last updated: September 2023
"Myasthenia what?" Upon telling anyone I knew about myasthenia gravis (MG), I would often have to repeat the name multiple times, explaining what this foreign diagnosis meant. To simplify it, I would often explain it as an autoimmune condition causing muscle weakness.
Before I could share about MG, I had to build an understanding of what it was. I deepened my understanding by reading through articles, plugging into the community, and attending conferences.
I have a rare form of MG called anti-MuSK (MuSK+) MG, so it was difficult to find information specific to it. I soaked up whatever I could find, resolving to beat this disease however I could.
Plugging into the community
Having an engaged community is a core value in my life. After my diagnosis, I looked for people I could connect with and stumbled upon a support group near me. I quickly registered and waited in anticipation as my symptoms slowly started to progress.
I arrived early at the hospital conference room and took a seat in the circle of folding chairs. People slowly trickled in from all different ages and backgrounds. A tall woman who sat next to me ended up also having MuSK+ MG.
She told me she was taking Rituxan. I finally started the same treatment this year as well. One woman who was helping host the group sat across from me. We were the only attendees of the same age and I made sure to connect with her after the group. I was eager to hear her experience and share mine.
She came to visit me and we shared our stories. I found tremendous comfort in finally meeting someone who truly understood how it felt to live life with MG.
At that time, she was organizing the MG Walk in San Francisco and was looking for volunteers. This ended up being the perfect opportunity to bring my family and friends into the loop about my new diagnosis.
I started a fundraiser for the MG walk and invited friends to walk with me. So many people showed up and donated. From the information booth to the last walk destination, I saw familiar faces guiding me along. That day still reminds me of the supportive community I have around me.
I shared my story on social media and connected with others with MG. I wrote a blog post for my church's women's ministry and shared about my diagnosis journey and the power of community. I felt seen and heard.
We are resilient
Awareness starts with me. Learning about this disease helps me share it more fluently with others. Plugging into support groups and the MG community gives me a place to share my struggles and successes. Working together with those communities amplifies our voices to help us be heard.
As we celebrate MG Awareness month, I hope our communities from around the world can join hands in our journey. It is our journey of pain and suffering, but also our journey of compassion and tenacity. Each person's struggles and symptoms may be unique, but we all share one thing. We are resilient.
How often do you experience MG exacerbations/flares?