Sickle Cell Strong: Sickle Cell Disease Advocate Marie Ojiambo

By Lauren Poteat, NNPA Newswire Washington Correspondent

It’s been more than 100 years since sickle cell disease was first discovered in America.

Today, the rare hereditary blood disorder continues to affect millions of people throughout the world.

Sickle cell disease – or SCD – affects approximately 100,000 Americans and occurs among about 1 out of every 365 African-American births, according to medical experts.

Nearly 1 in 13 African American babies are born with the sickle cell trait, which medical experts said means that an individual has inherited the sickle cell gene from one of his or her parents.

During its annual convention, the National Newspaper Publishers Association (NNPA), a trade organization that represents African American-owned newspapers and media companies throughout the U.S., partnered with Pfizer Rare Disease (Pfizer) to host a forum on this rare disease.

“I was diagnosed with sickle cell disease at the age of 1,” said Marie Ojiambo, a consultant for Pfizer, during the forum moderated by NNPA President and CEO, Dr. Benjamin F. Chavis, Jr.

“And always wanted to be a support system and advocate for research, for other young women, going through the same thing,” Ojiambo said.

“Because of this, I always felt like it was important for me to not only introduce myself by my profession, but also as a sickle cell warrior,” said the Kenyan native.

“When I competed in the Miss Africa USA pageant back in 2014, I made sure that my pageant platform, represented the same personal goals I had for myself and advocated for, sickle cell disease awareness,” she said.

Dr. Chavis emphasized, “The NNPA is grateful to Pfizer for introducing Marie Ojiambo to the Black Press of America.  Ms. Ojiambo is an excellent role model for millennials, and in particular for young African and African American women, who are interested in STEM (science, technology, engineering, and math) fields of study.  Marie Ojiambo’s outstanding success as a research scientist is truly inspiring as she did not allow the challenges of Sickle Cell Disease to prevent her from achieving her professional career goals.”

According to the National Center for Biotechnology Information, the sickle cell disease trait is most commonly found in places like Africa, India and Southeast Asia.

However, it is not exclusive to one race.

Also, as the Hemoglobin disorders follow the malaria belt around the globe, those who have the trait are relatively protected from malaria.

Although most who carry the sickle cell trait remain healthy, medical statistics show that if two healthy people who carry the trait join to conceive a child, there’s still a one in four chance with every pregnancy that they would have child with active SCD.

Ojiambo, who graduated from St. John’s University’s College of Pharmacy and Health Sciences in New York and who specializes in pre-clinical Pharmaceutical Research, is also the founder of the Sickle Strong Initiative—a Kenyan-based NGO whose mandate is to raise awareness around sickle cell disease and advocate for better health care opportunities for patients suffering from the disease in Kenya.

While she champions research and viable medications and solutions, Ojiambo also emphasized the importance of being regularly tested.

“Both of my parents were carriers of the sickle cell trait and so when they came together, I received the disorder,” Ojiambo said.

“It is so important to know your status and to get tested regularly,” Ojiambo continued.

“Take part in clinical trials and work to make sure you have access to primary care physicians and a good hematologist.”