by Lauryn Bray
From 11 a.m. to 5 p.m. on Sept. 7, KD Hall Foundation and American Red Cross will host a blood drive to raise awareness and support for sickle cell disease (SCD) and sickle cell research.
"We are putting a sickle cell at the forefront, and the reason why is because nobody talks about sickle cell. There's not a lot of money going into sickle cell [research]," said KD Hall, founder of KD Hall Foundation.
The CDC states that approximately 100,000 Americans are affected by SCD and 1 out of every 365 Black babies is born with SCD. After Hall learned her daughter KJ was one of them, she saw her life and the vision of the life she wanted for her daughter completely change. Since then, she has become an outspoken advocate for sickle cell awareness and research.
"My 8-year-old daughter lives with sickle cell anemia. That's when it became a real thing for me personally," said Hall in an interview with the Emerald. She said the hospital informed her of her daughter's condition after the results of a heel prick test came back positive for sickle cell.
"We had little Miss KJ on March 7 and then we found out on March 12, the day after we made it home from the hospital that she had sickle cell," explained Hall. "It was devastating."
Sickle cell anemia is the most common SCD. According to Mayo Clinic, symptoms of sickle cell anemia appear at around 6 months and can vary and change with age. The most common symptoms are: fatigue from low oxygen levels in the blood caused by sickle cells dying faster than normal blood cells, episodes of extreme pain often referred to as "crises," swelling of the hands and feet, delayed growth or puberty, vision problems, and/or frequent infections.
Also called homozygous sickle cell disease, sickle cell anemia is a disorder caused by two genes inherited from each parent. In this particular form of SCD, the affected person inherits two genes that both code for hemoglobin "S." This is an abnormal form of hemoglobin that causes red blood cells to be rigid, sticky, and sickle-shaped. Sickle cells die 12 times faster than normal blood cells. In a person without SCD, red blood cells die after about 120 days. In someone with SCD, red blood cells die after 10 to 20 days.
Another common and more mild form of the disease arises when an individual inherits an "S" gene from one parent and a different gene for another type of abnormal hemoglobin called "C" from the other parent. The symptomatology for patients with this form of SCD is usually much less severe.
Hall says she knew her husband had the "S" gene, but she fell in love and had kids with him anyway. "I always knew that he had the 'S' trait because the first day I met him, his mom told me," said Hall. "I just thought, 'Well, I don't have sickle cell, so it really [doesn't] matter.'"
When DNA is used to make RNA during a process called transcription, if both copies of a person's HBB gene have adenine where thymine should be, the pyrimidine uracil is made instead of adenine. In people without sickle cell anemia, the adenine in RNA is used to make the amino acid glutamic acid, which is then used for synthesizing proteins by connecting subunits or amino acids.
In people with sickle cell anemia, uracil replaces adenine during transcription and the amino acid valine is sequenced instead of glutamic acid at position 6 of the protein subunit beta-globin. Beta-globin is used to make hemoglobin. The replacement of glutamic acid with valine causes the abnormal "S" subunits to stick together, forming long and rigid "sickled" cells.
The ionic form of glutamic acid is glutamate, the most abundant excitatory neurotransmitter in the brain and central nervous system. Too much glutamate causes nerve cells to become overexcited, while too little causes mental exhaustion, insomnia, low energy, and trouble concentrating.
Scientists have recently begun administering glutamate to patients with sickle cell anemia in the last few years, though its potential to alleviate symptoms of sickle cell has been speculated and researched since the 1970s. The FDA issued approval for the use of L-glutamine powder to treat sickle cell anemia in July 2017, and while data supporting its use remains inconclusive, some researchers have been able to document its effectiveness.
For Hall, the most effective treatment for her daughter's symptoms has been naturopathic. "I started getting her the right probiotics and she stopped getting sick. And then we just had to invest in the right food," explained Hall. "I stopped getting her fast food and [started giving her] lamb, avocado, and stuff like that — good healthy fats, no sugars."
According to 8-year-old KJ, raising awareness about SCD is the best way we can support people with sickle cell. "By telling others, we can make sure that people with sickle cell don't feel alone — they'll know that lots of people care about them and want to help," said KJ. "We can also help to make sure they get the right vitamins and water they need."
If you are planning to attend the upcoming blood drive, Hall urges you to eat before donating. "We want to tell people that they need to eat before coming to give blood and they don't need to drink coffee," said Hall. Drinking too much coffee may disqualify you from donating.
Lauryn Bray is a writer and reporter for the South Seattle Emerald. She has a degree in English with a concentration in creative writing from CUNY Hunter College. She is from Sacramento, California, and has been living in King County since June 2022.
📸 Featured Image: Eight-year-old KJ Hall, who lives with sickle cell anemia, is raising awareness and supporting others living with SCD. (Photo courtesy of KD Hall.)
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