Growing up, Tanya Gentry withdrew from a world that didn’t understand her pain. There were no support groups at the time, very little mentioning of it in her home and no one to relate to about her distresses and how to overcome them. She felt isolated by her condition and in turn, isolated herself from the world.
After years of keeping her condition and her struggles out of the limelight, Gentry emerged from the mental prison that held her captive and was empowered to speak out.
She is now a passionate advocate for Sickle Cell Anemia in San Diego. Her passion not only stems from the fact that she has sickle cell, but also because she wasn’t comfortable talking about the disease until she was nearly 26 years old.
Gentry has been the president of the Sickle Cell Disease Association of San Diego for seven years, accompanied by her vice-president Michelle Williams who has serves beside her for the past few years.
At one point, Gentry was single handedly operating the association to continue providing services to other patients that were never available to her.
“Sometimes family members don’t even understand the pain patients are experiencing. Which is why we have the support system to make sure they have someone to relate to. But regardless of the pain sickle cell patients go through, we take that pain on the chin and we are the most resilient people I know,” said Gentry.
Sickle cell anemia is a hereditary blood disease that affects red blood cells. One out of every 500 African-American babies and one out of every 36,000 Hispanic-American babies are diagnosed with sickle cell anemia.
Due to the red blood cells inability to carry oxygen, the cells turn hard and sickled. Symptoms include severe pain crisis, heart attacks, strokes, seizures, organ damage, low immune system, and fatigue just to name a few.
Unknown to most, the amount of children born with sickle cell anemia in San Diego is on the rise. Based on records from Rady’s Children’s’ Hospital, the number of births diagnosed with this illness have doubled in the past three years.
However, The Sickle Cell Disease Association of San Diego, which has been in operation for over 30 years, has worked to provide support and resources for sickle cell patients of all ages.
“There are about 65 families at SCDASD and a lot of people are affected just based on one person in that family having the disease,” said Gentry.
“The numbers for the CDC (Centers for Disease Control) are not cut and dry,” said Williams.
“Almost 89% of sickle cell patients are classified as African Americans and 5% as other. However, those of Caribbean decent, African decent, or those with bi-racial backgrounds are sometimes classified as other. So there’s a lot of cross over there… and we think it might be higher.”
“It’s so weird for it to be an almost 90% African American disease and I find our people don’t know about it,” said Gentry. “They’re like, “Oh I’ve heard about sickle cell, didn’t they cure that?”
One of the biggest issues within the African American community remains to be a lack of discussion about sickle cell until someone we know personally carries the disease.
“Unless you know someone intimately who has it, people don’t know about it,” said Michelle.
A short list of celebrities that have sickle cell anemia that less known to the public include singer Paul Williams from The Temptations, legend Miles Davis, rapper Prodigy of Mobb Deep, actor Lorenz Tate (most known for his roles in “Why Do Fools Fall In Love” and “Love Jones”) and civil rights activist Jesse Jackson.
“Jesse Jackson has never spoke on it all, and it hurts because we need [his] voice and it seems he doesn’t want to be [minimized] or looked at differently because he has sickle cell,” said Gentry.
One stigma that plagues members of the sickle cell community is that they are drug seeking opiate addicts. Pain attacks are often treated with powerful drugs like morphine and norco to merely name a few, which can become addictive. However, only a small percentage of patients experience drug addiction.
This misconstrued association with drug addiction is often perceived as huge lack of medical knowledge and racial stereotyping in medical facilities that don’t specialize in blood diseases.
“Sickle cell pain is not just a pain, [imagine] it’s this constant batting of the shins, without a second in between not even a chance to come up for air. That kind of pain would put someone in the ICU if you found them on the side of the road bleeding,” said Michelle. “This is the kind of stuff that people suffer, daily. And it is one of those hidden silent diseases where people suffer in silence at times. It’s heartbreaking.”
“I get so upset sometimes when we are categorized as drug seekers. I don’t know one patient of mine that would dare put that medication in their mouth if they didn’t need it. They are the strongest most resilient people I know,” said Gentry, who was just recently released from the hospital due to her own complications of Sickle Cell.
“That’s why it’s sickle cell soldier, sickle cell warrior, because you literally are in the trenches in battling with your own body, fighting daily and that takes a strong person. And we still go to school, work and still produce everyday regardless of what we’re going through.”
One out of every 12 African-Americans carry the sickle cell trait. If someone were to procreate with another individual who carries the trait, they would have a high chance of producing a child with the disease.
In the past four years, three patients have passed away due and hospital neglect, including a toddler and two young adults. Within that time span, another handful of adult patients passed due to sickle cell complications.
Unfortunately, all medical facilities in San Diego do not have protocols for sickle cell patients, making it even more difficult for patients and families to prevent and treat symptoms before they become fatal.
While this disease may not attract as much publicity as more commonly discussed disease like AIDS/HIV, diabetes and heart diseases, sickle cell just as urgently demands our attention.
It’s as simple as going to the doctor and asking for a blood test so you can make informed decisions about who you are having children with.
“Know what’s in your blood,” said Williams. “Get tested and ask your family members if the trait runs in your family…ask your grandma or aunty or anybody if anyone has suffered from these kind of blood disorders”.
“Even if you’ve never heard of it in your family just [get] tested at your next doctors appointment so you know your status,” Gentry said.
Sickle cell anemia, while manageable, is a very difficult disease for many patients to experience. The best way to prevent your child from having to endure a lifetime of difficulty is by finding out if you and your partners Sickle Cell status before creating a new life.
The Sickle Cell Association of San Diego is located at 837 S 47th St. San Diego, CA 92113 and be contacted at (619) 263-8300