The COVID-19 virus has brought to the forefront our once again that our mission is to educate our sickle cell anemia patients, families and stakeholders. Fortunately, we have been working hard to lay a foundation so we can provide our members with timely and important information about sickle cell anemia. As a partner member of Sickle Cell Community Consortium I am able to liaise other organizations in the United States of America to discuss the specific needs of sickle cell anemia patients, caregivers, and family members.
With the COVID 19 pandemic this has made it easier to turn to the experts in the United States for sound advice. I have been and continue to attend weekly meetings to discuss our needs. I am now sharing the information I have been given at these meetings with you. The first of these is from a meeting I attended on March 20th 2020. Please read the attachments that I enclose and if you have any questions please contact us at Edmonton@ourscfa.org.
The videoconference presented by Dr. Andemariam, the Chief Medical Officer for SCDAA on March 23rd 2020 is now available. You may wish to view this several times to be familiar with the information she presented. I was impressed by the questions that came from the attendees and I know this will be your impression as well. Please check this out on Facebook
SCDA is here to help and advocate for you. I will let you know that I was one of those to contact the office of the Minister of Health to ask that they do something to protect our students who were attending schools and colleges. I feel that my call was instrumental when they made the decision to close our schools. Our board is now discussing the need to find volunteers who can help our school children keep up with their education as they are away from schools. We will put out a call for volunteers soon.
Medical and Research Advisory Committee Sickle Cell Disease Association of America.
Recommendations for Coronavirus (COVID-19) Preparedness
March 17, 2020 – With COVID-19 on the forefront of nearly everyone’s minds, the Medical and Research Advisory Committee (MARAC) at SCDAA wants to provide information to our sickle cell community. Educating yourself about the coronavirus reduces anxiety and empowers you to protect yourself – and your family – from getting sick. The potential health risk posed by COVID-19 is a real concern. The knowledge we have about how COVID-19 will affect those living with sickle cell disease is evolving constantly. In light of this, the risks to our community here in the United States may change in the upcoming days, weeks and months. It is critical that you stay regularly informed.
Full Article Below:
An outline of Decrease Burden and Minimize Morbidity
Medical and Research Advisory Committee Sickle Cell Disease Association of America
Full Article Below:
These two (2) articles are obtained from the Sickle Cell Disease Association of America. Courtesy of the Sickle Cell Disease Association of America, Inc., and Sickle Cell Community Consortium.
The only known cure for Sickle Cell Disease is a stem cell transplant (or bone marrow transplant). Due to the difficulty in finding an identical match and the significant risks involved in this procedure, including life-threatening complications, it is rarely an option for sickle cell patients.