SCD

Yet these people are allowed to make judgments on our person, and justify their bias actions, through the declaration of THEIR PERSONAL DISCOMFORT, when it comes to "Properly Medicating” us, their "Patients". Those with decades of medical records in addition to, documented evidence-based, pain management treatments. Which surely support the fact, that by treating the patient, they are NOT "enabling" a "possible" "drug addict".
Unfortunately, just as we allow our officers to disproportionately gun down citizens of color in the streets, on a daily basis. We also allow, our so-called "healers", to openly mistreat SCD Patients based upon their "feelings”, that they are not being presented with a “patient” in need of their services but, an "addict" just trying to "hustle" their resources. With both groups being given the protection and backing of the United States, due to their needs to make “split second, life or death decisions”, should they make the wrong call.
So, on what is our very first national Juneteenth holiday and World Sickle Cell Day. I ask you all to look at the many ways our country’s history continues to affect our everyday lives, through legacy laws and racial bias. As we, pledge to one another, to be a daily reminder that times are different, and certain behaviors will no longer be tolerated. Regardless, of one’s badge or white coat and stethoscope.
#stopsicklecellabuse
#worldsicklecellday2021

Just as our officers find ways to peacefully disarm and deescalate white perpetrators daily, without firing one bullet. However, in the same breath claim, that killing the black or brown perpetrator, was the "only choice". Sickle Cell patients are denied treatment everyday, based on the doctor and/or nurses’ "belief", that we are "Addicts" who are "Drug Seeking", for a cheap high. Rather than, just accepting the "FACT" that we are "Legitimate Patients”, suffering from a "Hereditary Illness " that is KNOWN....actually SCIENTIFICALLY PROVEN to cause pain like no other, not even that of child birth. Yet these people are allowed to make judgments on our person, and justify their bias actions, through the declaration of THEIR PERSONAL DISCOMFORT, when it comes to "Properly Medicating” us, their "Patients". Those with decades of medical records in addition to, documented evidence-based, pain management treatments. Which surely support the fact, that by treating the patient, they are NOT "enabling" a "possible" "drug addict".
Unfortunately, just as we allow our officers to disproportionately gun down citizens of color in the streets, on a daily basis. We also allow, our so-called "healers", to openly mistreat SCD Patients based upon their "feelings”, that they are not being presented with a “patient” in need of their services but, an "addict" just trying to "hustle" their resources. With both groups being given the protection and backing of the United States, due to their needs to make “split second, life or death decisions”, should they make the wrong call.
So, on what is our very first national Juneteenth holiday and World Sickle Cell Day. I ask you all to look at the many ways our country’s history continues to affect our everyday lives, through legacy laws and racial bias. As we, pledge to one another, to be a daily reminder that times are different, and certain behaviors will no longer be tolerated. Regardless, of one’s badge or white coat and stethoscope.
#stopsicklecellabuse
#worldsicklecellday2021

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.