A healthy red blood cell (left) and a sickle blood cell (right)
Acknowledging the threat of sickle cell anemia is the first step to victory over this disease.
Sickle cell anemia (SCA) is a disease that affects 90,000-100,000 Americans. It occurs in one of 500 African-American births. Hemoglobin S changes the shape and red blood cells causing them to get stuck easily in the small vessel, breaking into bits and pieces that can interrupt the natural body’s blood flow. The problem decreases the amount of oxygen flowing to the body tissues as well.
If both parents have SCA it is proven that you will have it as well. If one parent has sickle cell anemia you will have the Sickle cell Anemia trait. A child can only inherit this disease if both parents have this trait. Sickle cell disease is much more common in people of African and Mediterranean descent. It is also seen in people from the Caribbean, the Middle East, South and Central America
Symptoms include fatigue, paleness, rapid heart rate, and shortness of breath. Many sickle cell patients have painful episodes they call “crises” which can last hours or even days. Pain is usually felt in the long bones, back and chest.
SCA awareness is crucial and Dr. Carolyn Rowley of the Cayenne Wellness Center and president of the Adult Sickle Cell Association says we have a long way to go.
“Even though we’re 100 years into having a case study of sickle cell disease, we still have a long way to go and that’s a shame,” said Rowley.
Rowley, who also has SCA, has seen and experienced her fair share of physical and mental challenges due to the disease. She feels there isn’t enough awareness about SCA by neither the public nor the medical community.
“[SCA] patients, particularly… teens and children, when they transition into being adults and having adult care—that’s when everything goes awry,” said Rowley. “The struggles become even more exacerbated.
“One of the complications of sickle disease is pain, so that pain needs to be treated. Unfortunately, it needs to be treated with Opioids [and] doctors are so afraid of prescribing medication to patients, so that they can have their pain relieved.”
Rowley shared how patients have been denied pain medication due to the kind of medicine required to alleviate their pain. Many patients have been rejected due to medical staff ascertaining that the patient was addicted to the pain medication. Acute chest syndrome is the number one complication of SCA and often leading to mortality.
“After 100 years—patients are still struggling with getting pain under control,” said Rowley.
The need for awareness and education on SCA is vital and Rowley has made it her cause to get the word out. Through the Cayenne Wellness Center and her campaign, Dignity Now, Rowley is informing, educating and empowering through pamphlets, seminars and her center.
“The need for awareness is also for doctors, nurses and other healthcare providers to get trained,” said Rowley. “In my opinion, it’s important—it’s dire that these healthcare providers, at least once a year, get some kind of in-service training, so they can become familiar with what’s new in terms of research, treatment and to be able to treat these patients with respect.”
Ralph Gilmer became an advocate for SCA through members at his church. He and his wife were close to the Bishot family and their 5-year old son, Keylun Bishot, who has SCA and has undergone 36 blood transfusions as a result. He noted that he was aware of Keylun’s health challenges, but didn’t know the nature of his health problems.
“Keylun would come to church and he didn’t look ill, he didn’t look sick at all,” said Gilmer. “So it didn’t have any impact on me at all.”
It wasn’t until Keylun’s mother informed Gilmer she was meeting with the BeTheMatch Foundation (BTM), which raises funds to help patients receive bone marrow transplants. Bone marrow transplants have been proven to be effective with children afflicted with SCA.
“They were meeting with them to see if [Keylun] could be a candidate for a bone marrow transplant,” said Gilmer.
Mrs. Bichot invited Gilmer to that meeting where he learned about SCA and bone marrow transplants. The experience would move him to make the decision to become an advocate for the Bone Marrow Campaign and family sponsor for Keylun.
“After we met [with the BTM representative], we started strategizing about how we could get this on the radar,” said Gilmer. So we started at our church.”
Mrs. Bichot and Gilmer informed their church every five-to-six weeks about SCA and Bone Marrow donations. It wasn’t long before the church got involved. Gilmer wants people to know about the importance of SCA awareness and how important it is for African-Americans to become educated on SCA and bone marrow transplants.
“Most people think sickle cell is not a concern because the news—media is not speaking about sickle cell,” said Gilmer.
He continued, “If a person between ages 18-60 registered to be a bone marrow donor, that person could possibly help save or change someone’s life.
“Sickle cell is a global disease,” said Rowley. “It doesn’t just affect African-Americans, [Latino]-Americans in the U.S.—it affects everybody.
“It affects Africans, Italians, Southeast Asians, Saudi Arabians…there’s more of us that have sickle cell disease…than any other chronic disease.”
“We must start talking about [sickle cell],” said Gilmer
Gilmer shared that this month, a bone marrow match has been found for Keylun and that he will soon start the process of getting a bone marrow transplant.
For more information on Sickle Cell Anemia, you can visit www.sicklecelldisease.org. For information on becoming a Bone Marrow donor, you can visit www.marrow.org.
The Los Angeles Third Church of Religious Science in Leimert Park will be having a bone marrow drive September 29th. The church is located at 4323 Leimert Blvd, Los Angeles, CA. You can contact them at (323) 290-9514 or visit www.lathirdcrs.com.
You can learn more about the Cayenne Wellness Center by visiting its website at www.cayennewellness.org
Sentinel Intern, Tyler Ramsey contributed to this article.