Mako's story

I was 25 when the first symptoms of myasthenia gravis (MG) appeared. I was working as a physical therapist when I noticed my hands would grow too weak to hold a pen when I was trying to write patient files, and my eyelids felt so heavy that I could barely keep them open.

Then, one day, as I tried to climb the stairs at the hospital, my legs simply refused to lift. I stumbled and fell. I was living alone at the time, and the anxiety was overwhelming. I had no idea what was happening to my own body.

When my local doctor finally referred me to a neurologist, the words myasthenia gravis were mentioned for the first time. But, because my blood tests didn't show the typical antibodies, the doctors couldn't conclusively diagnose me. I was stuck in a painful limbo.

For nearly two years, I searched for answers. I was so weak that I couldn't walk long distances and had to be pushed in a wheelchair.

I remember crying in the hospital lounge when my planned treatment was halted because I didn't strictly fit the diagnostic guidelines. My doctor handed me a paper towel to dry my tears and said:

Eventually, a team of specialists came together to run a highly specialized advanced electromyography (EMG) test - a diagnostic test that measures the electrical activity of muscles and the nerve cells that control them. Finally, the definitive wave patterns of MG appeared. Hearing those words was an immense relief. I finally had a name for my illness, and more importantly, a path toward treatment.

My husband was my rock through all of it, attending every appointment and sitting by my hospital bed. Because of my health, we initially agreed that we didn't need to push ourselves to have children. But when I unexpectedly became pregnant and subsequently suffered a heartbreaking miscarriage, we realized how deeply we wanted to be parents.

Navigating pregnancy with MG is incredibly complex. It took intensive fertility treatments, five devastating miscarriages, and careful medication adjustments under the close supervision of my doctor. But we kept trying, little by little until we made it all the way to the delivery.

Because of my condition and the previous miscarriages, we had faced, the pregnancy just didn’t feel real. I couldn't even bring myself to buy things for the baby. When she was finally born, it was like oh, she is actually here… I have a child.

Raising a child with a chronic illness is undoubtedly tough, and there are days when my symptoms flare up. But when I look at her smiling or sleeping face, all that hardship melts into pure happiness.

With the help of targeted therapies, I have finally been able to reclaim my place in the world. I have returned to my profession as a physical therapist. Every week, I spend three days helping elderly patients in a rehab day service, guiding them through exercises and helping them navigate their own physical limitations. Having a space outside of my home where I belong and can contribute has been vital for my mental health – it protects my spirit and keeps me grounded.

Back when my symptoms first started, I could never have envisioned the beautiful, busy life I lead today. I am no longer just staring up at the ceiling, but I am living a life full of joy, surrounded by a community of support.