The Challenge of a Bleeding Disorder

 

Imagine being a parent in a slum in Asia. You lack running water, electricity, and sanitation. You live on the equivalent of $80 a month.

You have several children, always hungry. Stifling heat, noise, and dire poverty surround you. Your future depends on your eldest child’s future, because he will care for you as you age. Your country does not have a social welfare system.

Now imagine your eldest child has hemophilia—a life-threatening blood-clotting disorder that leaves him suffering, crippled by age ten and fearful of sudden death. Your son no longer attends school because he cannot walk. When he suffers a bad bleed, you must take public transportation and then carry him to the clinic. Upon arrival you are likely to learn there is no medicine.  Your government does not buy the blood-clotting drugs that are easily available in developed countries. Your only recourse, if you have access and can afford it, is to buy local blood for an infusion, which carries the risk of viral contamination. In the meantime your son's bleed has further ruined his joints, or worse, damaged his organs or brain. 

This is the reality for 75% of the world's 400,000 people with hemophilia. The 25% who live in developed countries lead largely healthy, normal lives thanks to regular access to treatment. 

Save One Life was created to address the immediate financial needs of the 75%. We primarily assist children and young adults who have hemophilia A or B, which occurs in one in 5,000 male births and is even rarer in females.  We also serve children with other factor deficiencies, von Willebrand Disease, Glanzmann Thrombasthenia and functional platelet disorders.