Over the course of her 34 years, Juanita Gougis has been shadowed by three ever-present companions: her doting mother, her supportive church, and the dreaded blood disorder, sickle cell disease (SCD).
The last entity on that list was uninvited and unwelcome. Sickle cell is a hereditary disease that forced entry into Juanita’s body at birth. It remains a brutal and shadowy acquaintance, one whose life-threatening potential is counterbalanced by the love and support Juanita receives from her mother and her extended family at Crenshaw Christian Center (CCC).
Juanita’s experience with SCD formally began with a diagnosis at the tender age of two. The subsequent years have been an arduous journey marked by tremendous pain, countless hospitalizations, numerous blood transfusions, and the psychological anguish that accompanies
this inherited and unpredictable blood disease.
Today, the South Central native, who has been attending CCC since she was in her mother’s womb, credits her faith for bringing her this far. “I believe in the blood of Jesus,” said Juanita.
Juanita’s mother, Wanda Gougis, not only fights to ensure that her daughter receives the best care, she is also a tireless advocate and teacher. Over the strenuous course of her daughter’s disease, Wanda has eagerly informed people about sickle cell and its disproportionate impact on Black folks. She enjoys sharing information about the latest treatments, while providing updates on medical and pharmaceutical innovations that are helping SCD sufferers lead more fulfilling lives.
September is National Sickle Cell Awareness Month, and Juanita and her mother are spreading a hopeful message – sickle cell disease may be life changing, yet it need not be life draining.
Owing to its hereditary nature, SCD can only be contracted if both parents carry the sickle cell trait. The disease ranks among a group of rare congenital disorders that affect the shape of red blood cells – the cells that distribute oxygen to all parts of the body.
In SCD, some red blood cells are shaped like sickles or crescent moons, making them rigid and sticky, thus slowing or blocking the flow of blood. The disease can wreak havoc on lives, with symptoms ranging from delayed growth, pain, dizziness, and fatigue to shortness of breath, swelling of hands and feet, vision impairment, and more.
There is no cure for SCD, but treatments can relieve pain and help prevent complications. Factors like stress, exposure to cold, dehydration and a host of other conditions can trigger a sickle cell pain crisis.
In addition to the intense and erratic nature of the disease, Juanita and her mother explain that navigating the health care system – that is, finding knowledgeable, culturally-sensitive doctors who understand the disease – can be challenging.
As with all people who suffer from chronic disease, support and nurturing from peers’ factors considerably into the contentment and mental well-being of SCD patients. As part of its commitment to the health of the South-Central community it has served for 50 years, CCC conducts monthly blood drives on its sprawling campus at the intersection of 79th and Vermont. A plentiful supply of blood is essential for SCD sufferers because they often need transfusions or blood exchanges, during which their blood is replaced with fresh plasma and red blood cells.
“We are devoted to the spiritual and physical well-being of our community,” said CCC Chief Executive Officer Angela Price Evans.
Evans — the eldest daughter of CCC founder, the late Apostle Frederick K.C. Price, and sister of current CCC pastor, Dr. Frederick K. Price – views spreading the word about SCD as a Christian act.
“The more we can do to elevate and educate our people, the more we are doing God’s work,” she said. “We are keenly aware of the cruel nature of sickle cell and its impact on Black people. It is our honor and privilege to do what we can to help those with the disease live their best lives.”
In addition to Juanita, there are approximately 3,000 people living with SCD in LA County and about 100,000 nationwide, according to Juanita’s physician, Dr. Yutaka Niihara, MD, MPH Clinical Professor of Medicine at the David Geffen School of Medicine at UCLA. Of those sufferers, approximately 80 to 90 percent are Black. Researchers theorize this is because SCD evolved in predominately Black regions of Africa and the Caribbean where malaria is common. As the theory goes, sickle-shaped cells helped protect these populations against the disease.
Dr. Niihara has devoted his life to treating and finding a cure for SCD. He and physician, journalist and educator, Dr. Corey Herbert, attended church services at CCC last Fall. During their visit, Dr. Herbert stressed the need for churchgoers to know if they carry the sickle cell trait, as that knowledge can help people make informed decisions about whom to marry and have children with (SCD is contracted when both parents have the trait). In addition, Dr. Herbert advocates for better care of SCD patients. Many U.S. doctors are not well-versed about the disease, leading to erratic and even negligent care for African Americans and other people of color.
Drs. Niihara and Herbert are advocates of a promising and effective treatment known as Endari, a pharmaceutical grade l-glutamine oral powder that has been shown to reduce the acute complications of SCD in adults and children five years and older. According to Dr. Niihara, not enough patients know about this promising treatment. Juanita credits the medication with improving the quality of her life.
Dr. Niihara has known Juanita since she was a toddler (he even included her in some of his clinical trials). He says CCC and other Black churches continue to play a vital role in disseminating information about Endari and other SCD treatments. He believes the blood drives CCC routinely hosts with the American Red Cross are a godsend to people living with the condition.
“Black patients do better with the blood from Black patients in terms of compatibility,” said the UCLA physician. “That is why it is so important that there are blood drives taking place in the Black community, and that there is always enough blood.”
Today, nearly 35 years into her SCD journey, Juanita is optimistic. Dubbed a “Sickle Cell Warrior” by her doctors, Juanita enjoys an active and productive life. She is employed, pursuing her passion for photography, and is attending school to become an MRI technologist. She enjoys traveling, swimming, and even sky diving. She was instrumental in bringing Dr. Niihara and other experts to the pulpit to inform and empower fellow churchgoers and the community at large.
As a lifelong member of CCC, Juanita is proud and thankful that her church is demonstrating its love for God’s children through its SCD awareness efforts.
“God puts everything we need here for us, we just have to figure out how to use it for our good,” she said. “In addition to a healthy diet, rest and exercise, my faith is part of my healthy lifestyle. All things are possible with God.”
For more information about Sickle Cell Disease visit the Sickle Cell Disease Foundation at https://www.scdgc.org. For more information about the monthly Blood Drives hosted by CCC in partnership with the American Red Cross, visit https://www.redcrossblood.org and enter: crenshawcc.