When you have a bleeding disorder, you have to be careful doing everyday tasks. It changes your normal routine. It changes your life.
For Malaika, her diagnosis of hypoprothrombinemia took her from a regular table tennis and cricket player to an avid reader. Any activity that could result in a cut or a bruise was off limits, and education became her primary focus. That, and staying alive.
She first knew something was wrong at 14. That’s when she got a small cut while cleaning the house and it wouldn’t stop bleeding. She fell unconscious and her family rushed her to the hospital. After securing the wound, she was sent home. But nearly a month later, the same thing happened. It was clear this was not normal. The investigation began.
The diagnosis of hypoprothrombinemia was grim.
But at least they had an answer and there were ways to manage it. However, her day-to-day life was changed forever. Outrageously expensive treatments changed her family’s life, too.
Every plasma transfusion Malaika needs is a true financial burden on her family. They’ve had some help from family and friends, but the upkeep of their daughter’s health has proved to be much more than anyone expected. Approximately once a month, Malaika needs a transfusion. Her medicine is also costly. Besides the medical necessities, education, the one thing Malaika can participate in without fear of injury, is also an expensive endeavor.
Optimism is often hard.
Anyone with a disease that doesn’t have a one-time cure can relate. The fight is every day. From the time you open your eyes in the morning to when you close them at night. Your disease is always there. It doesn’t sleep.
But, we can take some inspiration from people like Malaika. People who manage to stay positive, despite the trials that come with illness.