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Velvet Brown-Watts founding-president and executive director of the Supporters of Families with Sickle Cell Disease
- SCD occurs among about 1 out of every 365 Black or African-American births.
- About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
- If both parents have SCT, there is a 25% (or 1 in 4) chance that the child will have SCD.
- Saturday, September 14, 2019, 6th annual Sickle Cell 5K race is back on Greenwood Ave at 9 am.
By BWSTimes Staff
Before Velvet Brown-Watts became a married woman, her mother, Bonnie Johnson, who was a nurse, told her never to marry a man who also has the sickle cell trait (SCT).
Brown-Watts is one of the few African Americans knowledgeable about being a carrier of SCT, which is nothing to be ashamed.
“My mother was a nurse. She always told me, since I was 5, not to ever have a child with someone else who has sickle cell trait. She never told me the complications of trait or what it meant. She just told me ‘don’t do it.’ Our family is from the country in Mississippi — you just did what they said.”
Before May 2006, states weren’t required to provided universal newborn screening for SCD or SCT despite a national recommendation to this effect in 1987. Hence, those who have SCT should not be stigmatized for unknowingly carrying the trait, but having it means that a person has inherited the sickle cell gene from one of his or her parents.
Screening for SCT and SCD didn’t go into effect in Oklahoma until August of 1991.
Velvet’s husband, Jeremiah Watts, was born before the Oklahoma State Department of Health adopted rules requiring that all newborn infants be screened for SCT and SCD.
According to the Center for Disease Control (CDC), it is estimated that:
- SCD affects approximately 100,000 Americans.
- SCD occurs among about 1 out of every 365 Black or African-American births.
- SCD occurs among about 1 out of every 16,300 Hispanic-American births.
- About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
Jeremiah Watts was unknowingly the 1 in 13 African American babies born with SCT in Oklahoma before the mandatory screening began in the early ’90s.
Seeking to honor the promise Velvet made to her mother, she asked her soon to be husband, Jeremiah, if he was a carrier of SCT; he innocently replied with a “no”.
People with SCT usually do not have any of the symptoms of sickle cell disease (SCD) and live relatively normal lives. Hence, Jeremiah, as many are, was under the impression that he didn’t have SCT because he didn’t show any symptoms.
Velvet even went so far as to ask her fiancé’s mother, only to be met with the same answer has Jeremiah had given, ‘no.’ Neither was Jeremiah, nor any of his siblings screened for SCT or SCD at birth or anytime after.
It was only after their son Jeremiah Jr. was born in 2004, and received the mandatory screening that they discovered Jeremiah Sr. was a carrier of SCT, and their new son was born with SCD.
Jeremiah’s older brother was screened for SCD and SCT, a requirement for serving in the military, and was diagnosed as a carrier of SCT.
“None of them were ever tested [at birth]. All three of the men have the sickle trait,” Velvet explained.
According to the CDC:
- If both parents have SCT, there is a 50% (or 1 in 2) chance that the child also will have SCT if the child inherits the sickle cell gene from one of the parents. Such children will not have symptoms of SCD, but they can pass SCT on to their children.
- If both parents have SCT, there is a 25% (or 1 in 4) chance that the child will have SCD.
- There is the same 25% (or 1 in 4) chance that the child will not have SCD or SCT.
- If one parent has SCT, there is a 50% (or 1 in 2) chance that the child will have SCT and an equal 50% chance that the child will not have SCT.
“Our family was 1 in 4. It’s only 25% that will have the SCD; 50% that will the SCT, and 25% that what have SCD or SCT.”
Having a child born with the SCD radically change the plans that Velvet and Jeremiah had for themselves. Before Jeremiah Jr. was born Velvet worked for the Department of Housing and Urban Development.
“As soon as my son was born, I had to resign,” she said. “Our household lost over $40,000 immediately. It was devastating. For me, the person I thought I was going to be and the person I become are two different people,” she added.
During 2005, medical expenditures for children with SCD averaged $11,702 for children with Medicaid coverage and $14,772 for children with employer-sponsored insurance. About 40% of both groups had at least one hospital stay.
“I thought I was going to finish school. I’ve always wanted to help people. I started pre-med. My family thought I was going to be a doctor, and so did I,” she further explained. “I had to prioritize how I was going to do it all.”
Velvet shifted gears and became a fierce advocate for people living with Sickle Cell Disease and became the founding executive director for Supporters of Families with Sickle Cell Disease in Tulsa, Oklahoma in 2007. Velvet says that funding has been the organizations biggest challenge.
“I think the lack of awareness of the disease has made it difficult for people to get behind. We must talk about race when it comes to certain health disparities. If you go back and look at the history of the disease and how it was described. It was always described as ‘this is impacting African Americans. What people don’t understand is that it impacts all races”, she said.
“I think we are beginning to talk more about race, and the different stereotypes and biases that meet at the intersect of our healthcare system; so now, there are more voices to the cause and sickle cell is one of them,” she shared.
Every year Supporters of Families with Sickle Cell Disease raise awareness and funding through their annual 5K race. Two years ago the 5K race was held on Greenwood Avenue in Tulsa, Oklahoma, and last year, the race was held in Oklahoma City. And this year, their 6th annual 5K race is back on Greenwood Ave in Tulsa, Oklahoma on Saturday, September 14, 2019.
The 5K Race and Walk, Jog or Run event will begin promptly at 9 AM and ends around noon at Langston University’s Tulsa campus at 914 N Greenwood Ave Tulsa, OK 74106.
Registrees should arrive with adequate time to check-in as an individual or group.
SIGNUP HERE: http://oksicklecell5k.com
SHARE AND RUN, WALK or JOG WITH FRIENDS: https://www.facebook.com/events/2433107726776752/