Hadia M. - Diagnosed at age 14

Hi, my name is Hadia, and I am from Afghanistan. My journey with this disease began in a very challenging way when I was just 14 years old—at the peak of my youth, full of dreams for the future.

To summarize my story, it all started with a simple fever. I felt constantly exhausted and lethargic, which kept me away from school for a few days. When I finally saw a doctor, it was at the very beginning of the COVID-19 outbreak. The doctor suspected I might have contracted COVID-19 and prescribed extremely strong antibiotics.

After taking them, my body suffered a horrific adverse reaction. My entire skin broke out in tiny red rashes, which even spread inside my mouth, making it incredibly painful and difficult to eat. Day by day, I was losing weight and growing weaker. It was a terrifying situation, and not a single doctor in my city could diagnose what was wrong with me.

We traveled to Kabul, but by then, my health had deteriorated significantly. I eventually fell into a coma. Desperate for help, my parents took me from hospital to hospital, but many doctors refused to admit me because of how critical my condition was. After tireless efforts by my parents, one hospital finally accepted me. They ran countless blood tests for various diseases, but everything came back negative. In Afghanistan, there is almost no awareness of lupus, and cases are extremely rare.

Finally, a young doctor, observing my physical symptoms and conducting searches on Google, suggested that I might have lupus. However, they were not entirely certain and recommended that we travel to Pakistan for a proper diagnosis.

After facing immense struggles and difficulties, we managed to travel to Islamabad, Pakistan. There, the doctors 100% confirmed that I had lupus. Unfortunately, because of the delayed diagnosis and the lack of awareness among doctors in Afghanistan, the disease had already caused severe damage to my kidneys, leading to lupus nephritis. It was, and still is, deeply painful.

To this day, I continue to take my medications. However, for my regular check-ups, I desperately need to travel back to Pakistan. Given the current situation in Afghanistan, traveling there has become impossible for me. Now, I am living in deep fear, constantly asking myself: Will I ever end up back in that horrific state again?