San Antonio teen fights rare autoimmune disorder

June 1, 2020

Amaya was enjoying her sophomore year of high school when she started feeling ill.

“We had color guard practices and I felt awful,” she said. “I was almost fainting. I needed to sit down or else I was going to black out.”

As doctors tried to understand what was happening to Amaya, she needed blood and platelet transfusions to help her feel better.

“I needed blood two times a week, at one point,” Amaya said.

In February 2019, she was diagnosed with a rare autoimmune disorder called aplastic anemia.

When someone says ‘anemia’, well OK, she needs blood,” said Ernestine, Amaya’s mother. “But then her doctors started to educate me about what that was about. That started to scare me.”

Now, doctors say her best chance of a cure is a marrow transplant. To receive a transplant, a patient must find a matching donor on the Be The Match Registry—someone who has the same genetic tissue typing of the immune system as they do.

Patients are more likely to match a donor from the same ethnic or racial background, but only 10% of the current registry is of Hispanic descent, leaving patients like Amaya with a lower chance of finding their match.

While Amaya’s sister is a 50% match, her family hopes to find the perfect match.

“Don’t hesitate to join the registry,” Ernestine said. “Do it. If you don’t save Amaya’s life, you could save somebody else’s life.”

To support Amaya and patients like her, visit GoTeamAmaya.org, join the registry by texting AMAYA to 61474, or schedule a blood donation by calling 210-731-5590 or visiting SouthTexasBlood.org. To learn more about the registry, visit Gencure.org.

 


More from our blog:

Common diabetes drug may help prevent severe complication from stem cell transplant

Researchers suggest making stem cells more potent, not more numerous

Meet the master of the BBQ