Carol Elizabeth Owens
The Greater Rochester American Red Cross (Red Cross) entered Stephanie Ramos’ life in her infancy. Ramos was “just a couple of months” old when she had her first sickle cell anemia crisis episode.
Now, at 32 years of age, Ramos is an advocate for people who are dealing with sickle cell anemia. Ramos says she is “trying to educate [and] transform communities about sickle cell [anemia]” in her current advocacy roles with the Red Cross and University of Rochester Medical Center (URMC).
Ramos was born with sickle cell disease, which she says “there is no other way to cure” beyond medical measures such as blood transfusions and bone marrow transplants.
“I do believe they [Red Cross] do an amazing thing for sickle cell patients…the blood [they provide] is a part of our ‘tool kit’– our weapon to stay alive, keep pushing,” Ramos said.
She has had approximately 60 to 70 blood transfusions facilitated by the Red Cross according to her recollection. “As I started getting older, I started getting worse,” said Ramos about her sickle cell anemia journey.
Ramos repeatedly underwent a medical procedure at one point in which she “would literally sit there for three to four hours and just have a machine circulate [and] clean out” her blood– to replace ‘sickled’ cells, that “look like a crescent moon,” with normal round cells in order to give her body “good blood and get [the necessary oxygen and] circulation.” Ramos says the procedure is similar in function to kidney dialysis.
At 25 years of age, nearly seven years ago, Ramos underwent a bone marrow transplant; her donor was her twin brother, Jordan Ramos, who carries the sickle trait.
“As a patient, we [Ramos’ family] dealt with the Red Cross; with sickle disease, blood is very important– it is part of our medical tool kit,” Ramos said. “My mom and dad were both carriers of the sickle cell gene; my [twin] brother has sickle cell trait…he has to be mindful of who he has children with” to avoid having offspring who inherit the disease.
According to Ramos, sickle cell anemia is “not just an African American disease” as some people believe. She describes the Latino and East [Asian] Indian populations as also being impacted by the illness.
The Red Cross “provides a service that is — it’s life giving,” said Ramos. “If the Red Cross was not there, I don’t know if I would be here,” she added. “That’s the honest truth; I could say that for other people with sickle cell anemia as well. The Red Cross provides a life giving service– plain and simple.”
“It’s so important to donate [blood],” Ramos says, “because you are saving someone like myself…you are donating life!”
“Not all heroes wear capes,” noted Ramos, adding, “People who are volunteers, directors, administrators that are part of the Red Cross are awesome, awesome.”