As a 5th generation Sickle Cell Patient and a very active SCD Patient Advocate, World Sickle Cell Day has always had a special meaning to me. It’s the day that the United Nations chose to uplift Sickle Cell Disease to a global level. By declaring to the ENTIRE WORLD, that as its largest hereditary illness, it deserves the spotlight for these 24hrs. It is the day that countless warriors, caregivers, nurses, doctors and advocates alike, have spent countless hours preparing special events to educate those who don't know, what Sickle Cell is. With the goal to shine a light on the damage that it does not only, to the minds, bodies and spirits of those who carry it but, to our families who watch helplessly, as we battle the excruciating pain, created by our own bodies, day in and day out. From the moment we are born until the day we take our last breath.
This is the day that we as a community use as a sign of hope, that one day Sickle Cell Disease will have the recognition of the masses like, the big "C" and the global determination to find a cure. Or at the very least, extend us just a portion of the empathy, understanding and kindness that Cancer patients are seemingly entitled to but, for whatever reason, we are not.
Today is the day that we proudly wear our red shirts, not just as an act of unity. But, also with the hope, that the government will see that there are more than 100,000 of us living with Sickle Cell in the U.S. and millions suffering from it all around the world.
It is the day that we are to celebrate the strides, being made in science, on a daily basis. After all, 5yrs ago we were barely beginning to see the full extent and capabilities Stem Cell research would offer us, in terms of treatments and I dare say, a universal cure. Now we have 3 treatments passed by the FDA in just under 4yrs. All designed and created specifically for the daily management of Sickle Cell Disease. We shout from the monitors of our laptops and cell phones, "What a GREAT time it is for Sickle Cell!" because it seems that the days of hand me down medications and trickle-down research, are over. Finally, we have studies, that are solely for the purpose of finding us better treatments, more "user friendly" pain management and yes, a cure!
However, in the midst of all that is good surrounding Sickle Cell, on this World Sickle Cell Day. I can't help but to be reminded that this is also, Juneteenth. A day marked by both praise and pain in the U.S. Today is the day that slavery in the United States finally came to an end some 2yrs after the Emancipation Proclamation was made law, to supposedly free the slaves nationally. Unfortunately, the great state of Texas either lost, or failed to read and follow the memo.