The long awaited, State of Sickle Cell Disease 2016 Report from the American Society of Hematology is now available. September is National Sickle Cell Awareness Month so I have made it my mission to stay in tune with the medical advances available to sickle cell patients. This is my first post of 30 this month where I will share my experience parenting a child with sickle cell and medical advances that help improve the life of Sickle Cell Patients.
This is my daughter who is living with sickle cell disorder. She’s growing up to learn how to manage the disease by eating healthy and by partnering with her medical professionals.
More than 100,000 Americans in the US live with Sickle Cell Disease according to the Centers for Disease Control and Prevention. It’s 2016 and Sickle Cell Disease continues is still a major health concern in the African-American Community. Remember, all nationalities have the potential to inherit this disorder but it primary affects those of African decent.
My Main Concern As a Sickle Cell Advocate
Hence, one of the major concerns that continues to exist is a patient’s health often deteriorates once they transition into adult care. The State of Sickle Cell Disease 2016 Report helped shed some light on why this occurs:
- The toll sickle cell takes on the body grows worse over time.
- Older sickle cell patients don’t always have access to the same healthcare insurance they had as a child.
- Costs associated with adult sickle cell patients nearly doubles in adulthood.
- There is a lack of specialized hematologist around the country, so adult patients often rely on Emergency rooms for care. Unfortunately, emergency rooms are usually ill-equipped to give sustaining care for adults with sickle cell.
- Although we often hear that sickle cell is much less fatal for children and adults, even today, patients with sickle cell have a compromised quality of life, which needs to improve.
The good news from the State of Sickle Cell Disease 2016 Report
- 90% of those diagnosed with Sickle Cell as an infant or child are now able to live into adulthood.
- Hydroxyurea has been proven to help both children and adults with sickle cell. However, it is the only FDA approved medicine for sickle cell treatment.
- Currently there are 36 clinical trials taken place to help Sickle Cell patients. The goal of these trials is not just mange sickle cell symptoms, but to stop red blood cells from sickling.
Centers for Disease Control and Prevention. August 31, 2016. Sickle Cell Disease (SCD). Retrieved September 9, 2016 from http://www.cdc.gov/NCBDDD/sicklecell/data.html
ASH State of Sickle Cell Disease 2016 Report. September 7, 2016. American Society of Hematology State of Sickle Cell Disease 2016 Report. Retrieved September 9, 2016 from http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf
Reader Question – Do you have a story you want to share about how Sickle Cell impacts your life? If so, I’d love for you to share your story here.
Follow the #30forsicklecell hashtag (on facebook and Twitter):
NEW State of Sickle Cell Disease 2016 Report #30forSickleCell https://t.co/dn8A54iEp7 pic.twitter.com/5MrbUmFBXm
— Cleverly Changing (@Cleverlychangin) September 10, 2016
Follow the sickle cell conversation online:
By 2050, global #sicklecell disease population is expected to increase by 30%. #ConquerSCD https://t.co/gWEwSHWNPQ
— P Mimi Poinsett MD (@yayayarndiva) September 9, 2016
ASH President Charles Abrams, MD is making the case that now is the time to conquer #SickleCell disease. pic.twitter.com/0dxdVEjgWv
— ASH (@ASH_hematology) September 6, 2016
#SickleCell impacts our family & 100K Americans. Let's tackle this lifelong disease together https://t.co/DtKUZMwpo2 pic.twitter.com/uS1viJXdQV
— Devin&Jason McCourty (@McCourtyTwins) September 4, 2016