World Sickle Cell Day June 19, 2020
Happy World Sickle Cell Day Warriors far and near! So much has changed since we last met. The world is fraught right now with so much chaos, stress, and anxiety. It seems that we are on shifting sands, and life is so different one day to the next.
One thing that is the same is that we are alive this year to celebrate another edition of World Sickle Cell Day. I treat WSCD as my sickle cell birthday. It is so amazing that I am turning 40 this year, and I am officially an OG with sickle cell disease!
When my parents were told at 4 that I had SCD, we all never imagined what a full and vibrant life I would have. Hold on to that hope for your children and family members with SCD. Having a great family and friends support is often the most significant blessing when the storm of SCD pain hits.
Sickle Cell Warriors, Inc. is launching a fundraiser on June 19th to help support patients and families going through turmoil because of all the current instability. This Patient Support Fund will run from June 19th, 2020 to July 30th, 2020, will be administered by SCW, and go directly to needy families.
Donors: You can mark your donation to go directly to the Patient Support Fund using our new Donor Portal. If you have a specific warrior family in mind, please donate, then contact our staff via email@example.com
We have launched our new website, which (when finished) will have all the fantastic features of our previous site. This update focuses on embracing the global sickle cell community, and by using the translator on the top right-hand side, you can render the website in a specific language for you. It is one step closer to a global unified warrior family. There are many exciting new changes on the horizon for Sickle Cell Warriors, Inc.
The COVID pandemic has impacted the globe. It has also brought to the forefront the fact that people of color have more enormous challenges to receiving health care. These glaring disparities in health care are the most significant cause of death in black and brown people. Despite the Institute of Medicine’s report in 2003 stating that minorities receive poor to inadequate health care, there has been little progress. The disproportionate number of patients suffering from manageable chronic illnesses, obesity, high blood pressure, heart issues, diabetes, high maternal and fetal mortality rates during delivery. And of course, all we go through as warriors.
The color of my skin should not cause me more pain. I’m already suffering internally from my red blood cells clotting up inside me—need I suffer from health care providers too?
In this era of awakening global consciousness to the great suffering that minorities, particularly the struggles that black and brown folks deal with daily in the United States—let us not forget that Health factors into that. Without good health, you cannot have a good life. The tragic and horrific passing of George Floyd and Ahmaud Arberry gave the nation a jump-start to an issue that has been hidden and ignored for far too long. It shows me that without good health, one is at a higher risk of needlessly losing one’s life. Between COVID19 and all these racial health care disparities, it is like we are fighting a losing battle.
Our new initiative Black Health Matters will partner with sister organizations to help address some of the health disparities black and brown folks face. Our goal is to shine a light on the most significant challenges facing sickle cell warriors, and that is that every time we go to the hospital or have contact with a health care system, we must fight…literally, fight to stay alive.
Adequate compassionate health care should be a fundamental right, but that has not been the experience of most sickle cell warriors. We all have challenging experiences, specifically when it comes to receiving adequate health care, particularly in the Emergency Department. I will post examples each week on our website and social media pages.
Also, we are using the #SilenceKills #BlackHealthMatters #SickleCellMatters #WorldSickleCellDay2020 ; and will be doing a push on social media from 6/19 to 7/30. Join us and bring worthy partners to our attention.
Of the almost 5,000 warriors who died globally last year…over 72% died in the hospital or medical setting. We are a vulnerable at-risk population because of our chronic disease. My white friend had a sprained wrist, received more pain medicine than I did while in a full-blown crisis. This is not fair nor right. Having most health care workers not believe our pain, minimize our suffering, or shoulder additional burdens due to the color of our skin is not right. Now is the time to speak up. Now is the time to partner up. Now is the time to fight. Until there is a comprehensive, multi-racial, multi-pronged, universal program that addresses these issues on a systemic level, provides education, accountability, mentoring, and discipline, …more work needs to be done.
You can’t wholly and adequately tackle Black Lives Matter without addressing Black Health Matters.
Please join, donate, and share our campaign. If you have suffered poor medical treatment, and you feel it’s as a result of this health disparity, join us. If you would like to be a part, sign up for our newsletter, or send an email to SCDjustice@SickleCellWarriors.com ~ Tosin