By Genoa Barrow | OBSERVER Senior Staff Writer
While she died before he was born, Christen Brown remembers hearing about his maternal grandmother’s daily battle with sickle cell anemia.
This was long before blood transfusions and stem cell research were commonplace.
Brown’s mother and her seven siblings took turns administering their own brand of pain management.
“They used to always have to massage her because she used to always just be in pain,” Brown said. “She was very fragile and she spent a lot of time in and out of the hospital.”
Despite the family history, the possibility of any of the next generation having the trait or the disease wasn’t discussed.
“In my family, it was never, ‘Let’s go get you tested to see if you’ve got sickle cell.’ That never happened,” Brown said.
Born in Hayward with asthma and a hole in his heart, his medical emergencies were related to that. In the process of working on his heart and getting it to pump blood properly, the fact that he had the sickle cell trait was never discovered, to his knowledge. Brown spent two decades unaware that he carried the trait. His wife, Danielle didn’t know she was a carrier either until she got pregnant with their son, El Iyah (pronounced El-iye-yah) in 2012.
“They took my blood and they took my wife’s blood and they said, ‘OK, you guys both have sickle cell trait,’ which wasn’t anything that we had ever heard before,” he recalled.
It was uncomfortable, Brown added, to hear the news from a white woman, who delivered it devoid of feeling.
“It was terrible for somebody to take your blood and then describe to you what your genetics are and then also the trajectory of your life expectancy, for them to be able to take your blood and then create a prophecy around you. They said ‘Your son is going to have a one in four chance of having full-out sickle cell’. That’s the prophecy. From there they start evaluating or preparing us to fulfill this prophecy about Western medicine’s expertise on sickle cell – what’s going to have to happen, what are some expectations. Your child may have to be a NICU,” Brown said.
Now 10, the child, whose name means “the most high” in Hebrew, has been the root of his father’s seeking knowledge on solutions for better health. Brown grew up in Oakland and he and his family live in Fairfield. They travel to Sacramento frequently, as their children attend the Melanin Day School, held monthly inside the Florin Square building. He also sells supplements featuring the moringa plant at one of the Black-owned businesses housed there, Nubian Family Beauty Supply. He’s also providing some capsules for free online, at his website, creationofsociety.com, throughout 2023 for those living with sickle cell.
Brown is taking an Afrocentric approach to health that widens to overall wellbeing.
“It’s been a constant evolution. What I knew then, it’s not what I know now,” Brown said. “I was 24 when my son was born and I didn’t know nearly as much about it as I do now, But that was the actual event that would trigger me knowing more.”
El Iyah’s birth was a “traumatic experience,” resulting in his mother having a C-section instead of the natural birth aided by a doula that she’d anticipated.
“Once our child was born, they did a blood test on him and they said that he did have sickle cell anemia. It’s kind of hard to really articulate how they came to that conclusion, because in most cases, the child has this fetal hemoglobin, which is their mother’s hemoglobin, and not actually theirs; that lasts for a while,” Brown said. “He was born and he had jaundice, so he stayed in the hospital for a week in the NICU, under lights. The lights were supposed to help break down the excess bilirubin inside of his blood, or in his skin, and it did. I have nothing to compare it to. I don’t know if I would have taken him home, if that would have still happened anyway.”
Brown remembers taking El Iyah to Children’s Hospital Oakland when he was a toddler because he was lethargic. He had an infection in his lungs, referred to as acute chest syndrome, and had to have a blood transfusion that required him to stay in the hospital a few days afterward.
“I just remember him hollering and screaming because they had to strap him down just to put the IV needle in his arm and I just remember how traumatic it was to hear him scream and see other people strap him down and I thought, ‘There has got to be a better way to do this. There has to be a more gentle way to approach these children’ because this is such a traumatic event, not just for the child, but for his parents as well.”
During a follow-up, a doctor told Brown and his wife that El Iyah was being put on penicillin, their standard of care, and would have to take the antibiotic for the foreseeable future.
“That didn’t really sound right. He’s going to take antibiotics every single day for 18 years because that’s ‘what y’all do?’ I told him no and he called Child Protective Services,” Brown said.
“It was like double the trauma,” he continued. “They came into our house, my wife was crying and everything, because as parents, we made a decision based on us trying to, in our minds, protect our child’s health from just going on prescription drugs every day and keeping him from becoming a pill-popping animal.”
Some who work for such agencies have long been accused of having preconceived views about African Americans and how African Americans parent.
“It just feels like warfare,” Brown said. “Even when we go to the hospital now, it doesn’t feel like we’re going there for health services. It just feels like this is a colonial method of neutralizing a people’s ability to do for themselves, keeping them in a consistent program.”
He points to the chemist Linus Pauling, who discovered the cause of sickle cell to be abnormal hemoglobin, being a eugenist. Pauling wanted those who had sickle cell to have a mandatory stamp placed on their foreheads to signify their status as a warning to others. He also wanted to breed out harmful diseases, like sickle cell, from the human gene pool, which earned him comparisons to Adolph Hitler and pushback in the Black community.
Brown keeps abreast of current data and research from around the world.
“The current ratio for sickle cell anemia to sickle cell trait is 1 in 50 for African Americans and less than 1 in 1,000 for tropical Africans. This ecological disparity is attributed to thiocyanate, an anticyclic agent found abundantly in African staple foods. American food has negligible sickle cell nutrients. If we look at food and if we want to understand chronic disease in this country, then we attribute it to access to land, Black farmers and our ability to do for ourselves. If we look at the last 100 years, American Black farmers have lost nearly 95% of their land, which means the culturally specific foods that we would be growing to be able to address our health needs are no longer available, which means we’re eating at a European standard, which is not good for us because that means that we’re not eating according to our genetics. A lot of the chronic diseases that are manifesting now are in direct relation to the nutrient deficiencies that are a response of a colonized people.”
A few years ago, Brown had the opportunity to sit down with gene editing pioneer Dr. Matthew Porteus, who works with Stanford University and is a founder of CRISPR Therapeutics. It’s the basis of a groundbreaking study taking place at Children’s Hospital Oakland.
Brown explained his understanding of it: “They will put an individual through chemotherapy, bring their immune system down, then enter into their body using this technology called CRISPR, remove parts of their DNA, take it to another facility, re-edit the DNA, remove what they’ve considered to be the sickle cell disease, then place that DNA back into the body in hopes that it will correct whatever messages the body is giving for the sickled cells to take shape in the first place.”
Brown has heard stories within the sickle cell community, including rampant concerns about sterilization. Some have questioned the motivation behind the medical trials and the implications, given that sickle cell impacts mostly Black and brown people. Brown said he has been working with a woman in Southern California who is leaning toward having her daughter participate in the CRISPR study.
“I haven’t been trying to dictate to her and her family because she has a husband and she has two daughters, and they can make their decisions based on what they feel is best for their lives. I’ve just been providing them with alternative information and they’re going to have to do what they want to do with it,” he said.
Eat To Live
Along the family’s sickle cell journey, Brown has followed the work of researchers from around the world, including a number of African Americans looking for solutions. He has also talked to everyday people on similar paths to wellness. He was introduced to the healing properties of the moringa plant by a man from Ethiopia whom he met at Oakland’s Lake Merritt. The man gave Brown some seeds and his curiosity grew from there.
“There was a lot of information on it that gave me the understanding that it was nutrition that was influencing the blood cells to sickle. That’s why they say ‘You are what you eat.’ It manifests on a cellular level. If you have sickle cell, that becomes more magnified if your nutrition is bad or poor, your deterioration will happen that much more quickly.”
The Browns started using moringa every day.
“When I look at some of the stories that I hear about people who have sickle cell, it’s like my son’s life is the polar opposite. He’s not in and out of the hospital, he’s not having ongoing crises. He’s not in a space where that prophecy that they put on us is manifesting.”
There is no meat in the Brown family diet. They occasionally eat fish, but no dairy.
“We don’t eat things that have soy in it, which is pretty much like 90% to 95% of packaged and processed foods, because soy prevents iron absorption from happening inside the body. So we move forward with it by just understanding the nutritional sciences and what type of foods actually clean and can support blood development,” Brown explained. “So the spirulinas, the chlorellas, the moringa, the African yams, the cassavas, the chlorophylls. We’re heavy on smoothies with raw fruits and things like that.”
Brown started transitioning to a meatless existence a few years before his oldest was born.
“I didn’t even know why I was doing that, but then, at the same time, I had to go through that to arrive at another state of consciousness. A lot of that had to do with me just watching documentaries on how they were treating the animals prior to processing them to prepare them to be eaten. I saw one documentary, it was called ‘Meet Your Meat’ and I stopped eating chicken, I stopped eating hamburgers and stopped eating pork, all of that.”
He passed on the practice to his son and two daughters. Picking out fruits and vegetables from a home garden they used to have was a “magical moment.” They’ve never eaten fast food like McDonald’s, Kentucky Fried Chicken or Taco Bell.
“It’s a commitment to excellence,” Brown said.
“Our son brought us into a whole new era of consciousness where we can’t just eat like that. We can’t just eat like we’re going to a plantation. We’ve got to eat like we need it for freedom. That’s the goal.”
This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.