I never imagined that writing about my personal life would catch the attention of a global health-care foundation and turn me into a globe-trotting, public speaker at an international medical conference in the Middle East. But in this social media age, getting thrust onto the international business stage is possible—even when you least expect it.
I was born with thalassemia, one of the most common genetic blood disorders in the world. There are three versions of the disease: minor, intermediate and major. Those living with thalassemia minor are typically unaware that they have the illness. While those who have the major form, like me, live with a dysfunctional bone marrow that produces misshapen red blood cells that cannot transport oxygen to cells, thus requiring triweekly transfusions for survival.
Estimates indicate that at least 12 children suffering from thalassemia are born every hour around the world and almost 490 million are carriers of genetic hemoglobin disorders globally. While bone-marrow transplants and new gene therapies have led to the potential cure for some patients, most who inherit the disease will die from complications.
I started blogging and sharing my experience on Facebook and Twitter. In April 2013, one of my Facebook posts inspired a message from Riyad Elbard, president of the Thalassemia Foundation of Canada, asking me to share lessons on emotional wellness, a topic that I write about, at the Thalassemia International Federation World Congress, which took place in Abu Dhabi, United Arab Emirates, in October.
Elbard mentioned that he enjoyed reading my blog posts on Facebook and thought I could offer a much-needed message about how to thrive with medical challenges. Simply put, emotional wellness means embracing, rather than denying emotions, so we learn to cope with stress and anxiety in a way that results in a positive approach to life. Freedom from negative thoughts and behavior patterns leads to emotional wellness.