I’ve always known that I wanted to help people. Growing up as the son of a veterinarian and a high school teacher who later became a physician assistant, all with an extensive history of military service in my family – giving back to others is something that’s been well ingrained since an early age.

For me, pursuing a career in nursing felt like a natural path. As a nurse supervisor at my local hospital, I’ve always prioritized making sure patients get the best care possible. Little did I know how much I would need to draw on that same principle when navigating my own diagnosis.

In March 2023, I had a thymectomy to remove a thymoma, a rare cancer that develops in the thymus gland. But my bloodwork showed something more. I had markers for generalized myasthenia gravis (gMG), a rare, chronic autoimmune disorder that can result in life-threatening weakness of the muscles.

Unlike most people diagnosed with gMG, I was lucky to know a little bit about the condition and what might be in store for me, because my mother and aunt both live with it. That familiarity, as well as my nursing experience, helped me wrap my head around the diagnosis quickly and to avoid issues around misdiagnosis that people living with conditions like gMG often experience.

That being said, knowing about something and living with it are two very different things.

As a nurse supervisor, I am constantly on my feet all day, moving around to assist patients and support my team across the hospital. Over time, long shifts that used to feel routine brought on deep fatigue. I began experiencing challenges with basic physical tasks such as walking or climbing stairs. Just speaking at the end of the day became so difficult that I couldn’t even form words, which made communication with my coworkers and patients incredibly challenging.

The symptoms I experienced weren’t just physical – they often took a tremendous emotional toll as I was forced to adjust to new limitations. I used to enjoy woodworking in my free time and making unique furniture and other crafts to auction off at different organizations and for my friends and family. After I started experiencing symptoms, I had to learn to pace myself, manage my energy, and plan activities ahead of time so I wouldn’t overexert myself.

I was also thankful my team at work took the time to understand me when I had issues with my speech. Still, it didn’t stop the frustration of trying to feel heard. No matter what I did, it often felt like I could not get my body to make the sounds I was trying so hard to communicate. The sense of failure and hopelessness was overwhelming.

After my diagnosis, I tried several treatments that provided me with some relief, but they were not sufficient to manage my symptoms effectively. When I found a treatment approach that worked for me with RYSTIGGO®, (rozanolixizumab-noli) it made a significant impact and helped me to go back to doing some of the things I’m most passionate about. I was able to celebrate everyday wins both in and out of work, including spending time in my woodshop and having new adventures with my 12-year-old daughter, who loves to dance and ride bikes. This has been my experience after taking this treatment, but I know that results can look different in others’ treatment journeys.

I was also able to apply my new perspectives to patients during their own times of need. As nurses, we are trained to not only help patients navigate the challenges they face, but to see the world through their eyes with every step and setback. My journey with gMG granted this insight, providing me with the unique opportunity to offer my support more effectively and empathetically than ever possible before.

If you’re newly diagnosed or struggling with gMG, here’s what I want you to know:

Learn as much as you can. Understanding the condition can make it less daunting and help you take back control. I recommend joining support groups or online communities, such as the Myasthenia Gravis Foundation of America. Sharing experiences and advice with others who understand your journey can provide much-needed encouragement and support.

Know your limits. Myasthenia Gravis is often called the butterfly disease because it affects everyone differently, so it’s important to understand it’s okay in those moments when you may have challenges. You can still do what you love; you just may need to make adjustments accordingly.

Work with your doctor. It’s important to talk to your doctor about the treatment options available to you, the benefits and risks, and collaborate together on a plan to manage your own personal journey with gMG.

Ultimately, living with gMG requires resilience. By embracing a positive outlook, leaning on your community, and celebrating everyday wins, you too can stay motivated to keep pushing forward.