Why myasthenia gravis awareness matters, this June and always
My name is Sethunya Maikano, and I am a 31 year old registered nurse, mother and writer who lives in Botswana, Africa. I am passionate about community service, youth ministry, and health advocacy. I serve in various leadership roles within the Catholic Church, particularly in youth ministry, which has given me opportunities to work with and inspire young people.
Outside of advocacy, I enjoy writing, public speaking, organizing community events, and spending time with family and friends. My faith, loved ones, and support network have been some of my greatest sources of strength throughout my journey with myasthenia gravis.
I was diagnosed with seronegative generalized myasthenia gravis in October 2020 after giving birth two months before. Like many people living with rare diseases, I spent a significant amount of time searching for answers before finally receiving the diagnosis that explained what I had been experiencing.
My diagnosis came after a period of unexplained symptoms that affected my daily life. Even though I had had problems with my eyesight growing up, particularly ptosis, it didn’t cause enough concern to start digging.
After childbirth, I experienced muscle weakness and fatigue that seemed disproportionate to my activities, and over time the symptoms became increasingly difficult to ignore. What caused alarm was the dysphagia that made it difficult to eat at a time when I was nursing my newborn.
After numerous consultations, tests, and referrals, doctors eventually identified myasthenia gravis as the cause.
Receiving the diagnosis was both overwhelming and relieving. It was frightening to learn I had a chronic autoimmune condition, but it was also comforting to finally have an explanation and a path forward.
The challenges of MG have been both physical and emotional. Physically, MG can make even simple tasks feel exhausting. There are days when my body does not cooperate with my plans, and learning to adapt has been an ongoing process.
Emotionally, one of the hardest parts has been dealing with uncertainty and helping others understand a condition that is largely invisible. Many people see you looking well and assume you’re fine, without realizing the effort it takes just to get through an ordinary day.
Financial and healthcare-related challenges have also been significant, particularly when it comes to accessing specialized care and treatment. Finding neuromuscular specialists and a wide-range of treatments is difficult for MG patients here.
MG has changed almost every aspect of my life. It has taught me patience, resilience, and the importance of listening to my body. I’ve had to redefine what strength means. Before my diagnosis, I often measured success by how much I could do. Now, I’ve learned that strength can also mean resting when necessary, asking for help when needed, and continuing to move forward despite uncertainty. Living with MG has also given me a deeper appreciation for life, health, and the power of community.
I wish people understood that myasthenia gravis is much more than “being tired.” Fatigue in MG is not ordinary tiredness. It is a profound muscle weakness that can affect speaking, walking, eating, breathing, and countless everyday activities.
I also wish people knew that symptoms can fluctuate. Someone with MG may seem perfectly fine one moment and struggle significantly the next. Just because a disability is invisible does not mean it is any less real.
Most importantly, I want people to know that those living with MG are not defined by the condition. We are students, professionals, parents, friends, advocates, and dreamers who happen to live with a rare disease.
This June, I am continuing my commitment to raising awareness about myasthenia gravis through advocacy, education, and community engagement. As someone living with MG, I understand the importance of visibility and education in improving understanding and support for those affected by this rare disease.
One of the major initiatives I am leading this year is the 3rd Annual Myasthenia Gravis Awareness Event. This initiative began in 2024 with the goal of taking MG awareness directly into different communities and creating conversations where they are needed most.
Each year, we focus on a different audience, tailoring the message to reach people who may otherwise never learn about the condition. This year’s event will be held at our local high school in Tonota, Botswana, where we will engage students and staff in discussions about myasthenia gravis, invisible disabilities, and the importance of empathy and inclusion. Young people are powerful agents of change, and I believe that educating them today helps build a more informed and compassionate society tomorrow.
In addition to organizing the awareness event, I am using social media and personal storytelling to share my experiences living with MG. By speaking openly about the realities of the condition – the challenges, the victories, and everything in between – I hope to increase understanding, encourage earlier diagnosis, and help others living with MG feel seen and supported.
For me, advocacy is about more than sharing information; it is about creating connections. Every awareness event, every conversation, and every story shared is an opportunity to remind people that rare diseases matter, that invisible illnesses are real, and that no one should have to face their journey alone.
As we mark MG Awareness Month, my hope is that these efforts will continue to spark meaningful conversations, challenge misconceptions, and build a stronger, more informed community for everyone affected by myasthenia gravis.