Hello! Happy World Hemophilia Day!
I was diagnosed at the age of 6 months after the bleeding didn’t stop after circumcision and doctors figured out that something was wrong with the coagulation cascade and it turned out they were correct! I was missing Factor VIII – completely – it just wasn’t there. Less than 1% as they call it.
Since then it has been a roller coaster ride. I have multiple cystic lesions with three major surgeries including one in which DHS was implanted after a pathological fracture of Hip – well that was a decade ago. Time flies!
More importantly, it is because of Hemophilia that I have been able to meet some of the most caring, loving and smart doctors in our part of the world. I was lucky enough to serve at the NMO of my country and was able to interact with the brilliant team which works day and night at WFH to make impact in the lives of PwBD around the world and they do make a huge difference.
I have myself seen closely for three years how the WFH Humanitarian Aid Program has changed the quality of treatment for PwBD in Pakistan. There are patients who have been saved from a life long deformity and they might never hear about these complications of cystic lesions because of the support we have had from WFH. Is everything perfect? No, but it is definitely better for a lot many patients especially those registered with the HFP and for that we as a patient community are eternally grateful to all those at WFH! You guys are the real heroes!
It’s been a journey that has shaped my worldview and through social media platforms and WFH events, I have connected with enough people of bleeding disorder community that I rarely feel alone and that is extremely important because in a globalized world like ours nobody should suffer alone. Just a few words from a fellow bleeder sometimes go a long way in consoling a person when he is going through the worst.
Today is the day when all the community should come together and hold each other to ensure that nobody has to suffer alone. A society is known by how it treats those who are most vulnerable within it.
In my interactions with PwBD over the last several years I have found stories of hope, pain, courage, anguish and at times even frustration, but no matter how dire the situation I have never met a PwBD who is ready to give up and that makes them undefeated!
P.S: This is me visiting a famous Gurdwara in Pakistan! Yes we have them here and they are well protected so it’s time for all you fellow bleeders to come visit and we will show you around! 😀