Often times people with sickle cell disease are alone in their pain. They usually don't know another person in their community, school or family that has it. As a result, we feel alone in our battle with sickle cell.
I'm here to tell you (and me) that there are people all over the world suffering with sickle cell disease. And thankfully, we are finally joining to advocate, educate and support each other.
The World Health Organization (WHO) says "Approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia."
According to the U.S. Census Bureau, as of January 7, 2013 the world population is 7,058,157,073. That is just the number of people who were "officially counted".
If we do the math, that means about 352,907,854 "officially counted" people have a haemoglobin disorder. If we add numbers of people from places like India, where all cases of sickle cell disease are NOT officially counted, that original number would be far greater.
Statistics are good, we should know how many people are suffering. However, we need more to be done besides counting us. Some organizations like the World Health Organization (WHO) report data and define strategies for prevention and control of diseases (like sickle-cell disease).
In response to a resolution on sickle-cell disease from the 59th World Health Assembly in May 2006, specifically, WHO resolved to:
increase awareness of the international community of the global burden of these disorders;
promote equitable access to health services;
provide technical support to countries for the prevention and management of these disorders; and
promote and support research to improve quality of life for those affected.