June is the Myasthenia Gravis Month set aside to raise awareness about the breakdown between muscles and the nervous system. A 14-year-old survivor ASAMALA CHAPITA*, who refused to be broken by pain and stereotypes associated with the rare illness shares her experience.
From a girl lying helpless in an intensive care unit (ICU) to a survivor sharing her tale of grace, this could be your story too.
I am just a 14-year-old who refused to be broken by a rare illness鈥 Myasthenia gravis.
My story could also be yours if you have ever felt unseen, unheard or misunderstood.
The breakdown of coordination between muscles and nerves disrupted my life for years, silently weakening my muscles and stealing my peace.
At times, I believed God had forgotten me.
The symptoms appeared familiar to doctors, yet remained undiagnosed. It began with swollen eyes and soon spread to my muscles and organs.
I visited top hospitals, but the diagnosis? Stress, hysteria鈥.and other mental labels.
I felt misunderstood, thinking I had been bewitched. As I twisted my lips when speaking, some people mistook my condition for kunyada or laziness. I often couldn鈥檛 eat nsima with my hands; every bit felt so heavy.
Still, hope endured though I couldn鈥檛 fully understand or express what I was feeling.
My parents considered taking me to a neurologist, but were delayed by misdiagnoses.
Meanwhile, my eyes and facial expressions were affected. So were my appearance and skin tone. Some people called me lazy.
A silent battle had just begun, a confusing rollercoaster.
I suddenly felt weak or breathless. During one social gathering, I suddenly felt my face drooping. My speech would slur and I鈥檇 struggle to chew or smile.
Sometimes, I would sleep for hours. Other times, I couldn鈥檛 keep my eyes open. Many times, my parents found me collapsed in my room, breathing irregularly. Friends shunned me, either 鈥渢ired of drama鈥 or unsure of how to support me.
As the situation worsened, I would collapse for longer periods. Once, my lungs collapsed and I was taken to the ICU where I was placed on a ventilator.
It was a period of intense doubt, pain and fear.
Another day, I collapsed while going for a bath. I couldn鈥檛 breathe or move a limb. My family panicked and took me to the hospital. Luckily, I returned home alive after few hours on the oxygen machine.
It happened again a month later, most terrifying phase of my life. I was admitted to ICU for three weeks. I couldn鈥檛 breathe as there was no coordination between my nerves and muscles.
Some patients came and recovered or died while I breathed and ate through a tube.
Eventually, the costly but restricted medicine arrived from Zimbabwe: Polygam.
The drug is not available in Malawi. At first, a supplier in South Africa failed to deliver the dose after being paid in full.
The medication from Zimbabwe was brought by a prominent government official.
For five days, every 24 hours, life was injected back in my veins.
Today, I am alive and recovering. I thank God for this second chance.
June is Myasthenia Gravis Awareness Month when we join hands to raise awareness about the little known disease that has reshaped my life.
This month, I remember all those silent prayers in the ICU, the loneliness I felt in a room full of people and the strange strength when all seemed lost.
The chronic autoimmune disorder weakens muscles used for movement, expression, speech and breathing. It disrupts communication between nerves and muscles until the body begins to fail.
I had never heard of it until it became part of my life.
The condition has no cure, but can be managed with rest, restricted medication, surgery and lifestyle changes.
The symptoms fluctuate. Some days, I could walk, smile and talk normally. Others, even lifting my head or swallowing water felt impossible.
The emotional and financial toll is huge. To many Malawians, it remains unfamiliar and misunderstood.
I share my story to raise awareness. Someone may be struggling as I was. They need support. They need answers. They meed hope. They do not need to be judged.
*The teen author is writing a book to share her brave fight against the rare condition.