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Sep. 5, 2018

Presidential Message on National Sickle Cell Disease Awareness Month

SCD is a debilitating condition that affects more than 100,000 Americans of all ages by slowing or blocking blood flow, causing pain and progressive organ damage, and reducing life expectancy.  While the disease disproportionately affects African Americans, other racial and ethnic groups can also be affected.  Bone marrow and stem cell transplants are the only current forms of treatment with the potential to cure this disease.  These procedures have a high disease-free survival rate, but it can be difficult to find a matching donor.

My Administration is committed to supporting research to develop a cure to SCD that is available to all people, expanding on the achievements of current treatment options.  Clinical trials to accelerate the development of new gene and cell-based therapies within the next 5 to 10 years will be conducted as part of the National Institutes of Health’s Cure Sickle Cell Initiative, which will launch this month.  Additionally, we are working to better train healthcare providers to identify individuals with SCD and improve the quality and continuity of their care from infancy through adulthood.  As a result of the many advances and medical breakthroughs in genetic therapies and research, we are now closer to finding a cure for all SCD patients.

This month, we celebrate the progress made in treating Americans suffering from SCD and renew our commitment to end this disease.

Oct. 13, 2017

By the way, did you know that I'm often told by persons in the hospital that when nurses overhear Dr's not doing right by the patient speak up, they are put on a DNR list?

I wondered why I've witnessed black nurses tell Patients, that they understand what they are going thru because they have Sickle Cell in their family, think their being helpful by approaching the Dr to advocate, I don't see that nurse again!

They're put on a "Do Not Return" list! It goes to every hospital and those nurses can't work anywhere! They lose their homes, wind up homeless. living in their car until they lose the car!

Who knew???!!!

Oct. 7, 2017

#Racism in #medicine: The harsh reality of #SCDLIFE

 

From the beginning when someone was diagnosed with this illness they were never told that reality and what to do about it. We unknowingly procreated and made ill children because they knew no better. The medical community chose to diagnose but not advocate and make  patients aware. Would this have happened if patient were white? Does the medical community really believe that African-Americans can tolerate being on a higher pain scale than Caucasian American? Is this mentality the reason behind The lack of care and treatment or is it race? Wdyt? #LetsTalk

Aug. 13, 2017

After you finish crying #letstalk...How do you guys feel about the film? I'm not talking about the MAGNIFICENCE of the art. I'm talking about the subject at hand...
This writer and filmmaker is accomplished in his art and he is a Sickle Soldier as well! I need help in finding ways to get his dream realized! He has made a few amazing short films and he wants to do a motion picture. I need help in finding ways to get him funding to get him making a phenomenal piece of art! We all know that those that suffer have the most amazing artwork so can you even imagine this coming into fruition? Help me help him make this happen!! shawnstestimony@gmail.com