VelocityTX, an incubator for biomedical startups, hosted a blood drive for the South Texas Blood and Tissue Center on Wednesday at its Eastside offices in combination with a registry drive for Be The Match, the national stem cell and bone marrow registry for donors.
Mayor Ron Nirenberg spoke to reporters while giving blood about the historically low blood supplies and need for more donors.
“Every donation is several lives saved,” Nirenberg said. “So it’s one of the easiest ways we can give back to our community.”
He also encouraged residents to sign up for the registry, which he said he joined about seven years ago. The registry needs many more potential donors than will actually be called upon because only one in every 430 names on the registry will end up matching with a recipient.
Patients with blood disorders or blood cancers need transplants from a donor with the same genetic markers of the immune system, which is connected to a person’s race and ethnicity. Although African Americans are more likely to have sickle cell anemia, a blood disorder that often requires bone marrow transplants, that group is drastically underrepresented on the registry. White recipients have a 70% chance of finding a match, but Black patients in need of a donation will only have a 23% chance of finding a match.
That’s a statistic that Shokare Nakpodia would like to change. A creative director at the advertising agency The Mighty Group and the founder of DreamWeek, Nakpodia was instrumental in promoting the blood drive and donor registry event, and described it as a way for black communities to practically care for their friends and families.
“We say Black lives matter, and, of course, that’s the case,” Nakpodia said, “but now we have an opportunity, it’s not just a metaphor, it’s not just a rallying cry. … African Americans within our community can actually save Black lives.”
Two of the patients waiting for their perfect match are Kami Crawford, 17, and her sister Kyra, 15. The girls are both Black and have been battling sickle cell disease their entire lives.
Life as a single mom with two very sick daughters is tough, said Dana Jones, their mother. The girls frequently end up in the hospital because the disease severely compromises their immune systems, and they each need blood transfusions every two to four weeks.
“A simple cold for me could be a hospital visit for them,” Jones said.
She said it’s very rare for two siblings born back to back to have sickle cell disease, and she was overwhelmed when both daughters were diagnosed with it soon after birth.
“You look at my daughters, and you would never know they’ve been in pain since they were born,” Jones said. “They describe it as feeling like shards of glass going through their body. It’s very intense.”
Jones said her daughters have been on the registry for about three years now, and she is hopeful that finding a match and getting a transplant will give them the pain-free, disease-free life that she always dreamed of for them.
“Every day that they have sickle cell it does more damage to their body, and I just want my girls to have the best, longest life they can possibly have,” she said. “They have so much fire in them in spite of what they go through on a daily basis. They’re amazing kids.”
She has become an advocate for the Be The Match registry, especially encouraging African Americans to sign up and give her daughters a better chance at finding a match. Even if her own daughters don’t find a match, Jones said there’s a huge need.
“There are so many minority kids and minority adults that need a transplant, and it’s so hard [to find a match] because it’s very slim pickings,” Jones said.
Leticia Mondragon, who works with South Texas Blood and Tissue to find donors for Be The Match, said the process for signing up for the registry takes only a few minutes and a cheek swab. The sample is then stored in the donor database until it’s matched with a recipient. The chances of actually donating are pretty small, Mondragon said, noting she has been on the registry for 20 years and never been matched with a recipient.
She said the biggest misconception she encounters when trying to sign up donors is the idea that the donation will involve a painful, surgical procedure, when in fact 80% of all donations are now done with peripheral cell donation, a process similar to donating plasma.
The signup process is fast and simple, but once on the registry Be The Match asks for donors to be absolutely committed to the process, Mondragon said. Sometimes a patient is matched to a donor who ultimately decides not to give, and she said that experience is crushing for the patient waiting for a life-saving donation.
One year after the donation, donors and recipients are able to meet each other in person for the first time, if they choose, Mondragon said, and for some that leads to a lifelong friendship.
Dot Ward, a stem cell therapy nurse at the blood center who donated stem cells to a 19-year-old leukemia patient in April 2004, now calls her recipient her sister and talks to her at least once a week.
Ward has been on the registry since 1998 when she started working at the blood center. She said the date she was scheduled to donate in 2004 was her own mom’s birthday. At first she considered moving the date, but her mom wouldn’t hear any of it and accompanied her to the donation.
“She’s like, ‘I’m gonna be there with you, we’re doing this. I’m having another birthday. This is your chance to give someone else another birthday,’” Ward said.
Almost 17 birthdays later Jemma Wilson, the London-based recipient of Ward’s donation, is 35 years old and planning a wedding.
“If she wouldn’t have gotten the transplant she wouldn’t have seen her 20th birthday,’” Ward said of Wilson.
Ward, who is African American herself, said she understands why her community is hesitant about signing up for the registry and believes more education and outreach through trusted sources such as churches is the only way to increase the number of registrants. She said realizing the power and importance of donating might help alleviate any fear and uncertainty potential donors feel.
“This is something that not everybody will sign up for, not everybody will qualify for,” Ward said. “But the ones that do, they’ve been chosen. So look at it as you’re special. You’ve been chosen because you’re special.