September marks start of Sickle Cell Awareness Month
September is National Sickle Cell Awareness Month. It looks to bring attention to a disease that the CDC estimates impacts 100,000 Americans.
While that total number is low, not all demographics are equally at risk. The Red Cross says 98% of all cases are African American, with the CDC saying one in every 365 African Americans born in the U.S. have the disease.
Dr. John Muthu, the director of the Adult Sickle Cell Program at NYC Health + Hospitals Kings County, says that some people are fine with the condition, but that for others who have trouble getting enough oxygen around their body, "this deformation of the red blood cells causes damage to the organs... it causes pain, the average life expectancy of someone with sickle cell disease is in the mid 50s."
Muthu says awareness has gotten to the point where all newborns in America are screened for sickle cell now, but diagnosis is just the beginning.
"It is a condition which lasts a lifetime...it is very pertinent for these patients from the time they are born all through their lifetime to be closely monitored by one single hematologist, and that's very important so that nothing is really missed in the proper follow-up," said Dr. Muthu.
He adds that patients are never truly in the clear and need to always make sure there's care or treatment nearby wherever they go, adding that the disease can be unpredictable, and that the patient could be well one minute, but the next minute they may become very ill.
"They can suddenly have excruciating pain, they can have serious life-threatening infections, they can suddenly have serious damage to their internal organs," said Muthu.
While funding still lags compared to other diseases, Dr. Muthu says research and treatment options have gotten better over the last couple decades as more people have learned about sickle cell - but work still needs to be done to make it more accessible in the communities that are most impacted.