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SALT LAKE CITY — For Kaiya Endo, her symptoms started with persistent nosebleeds, chronic fatigue and bruises, but eventually led to emergency room visits, hospitalizations, the postponement of her college education and the need for stem cells.
The 18-year-old from Murray thought she had just caught a common cold in her dorm at Cal Poly, but in October she received a diagnosis. aplastic anemia — a rare blood disease in which her bone marrow doesn't produce enough blood cells for her to function.
“I went (to the emergency room) and they were doing tests and they tested my blood. The doctor came in and he said, 'You don't have white blood cells, so here we are. I'm so glad I came.'' “I don't have any platelets, which is very strange,'' Endo said.
Endo has very limited treatment options for his aplastic anemia, especially since he is so young, and his unique ethnicity – 50% Japanese and 50% Caucasian – limits his access to bone marrow transplants. There is. She explained that transplants from her parents involved great risks because they were only half alike and had an age difference.
Since the risk of recurrence is too high for treatments other than bone marrow transplantation, the only viable solution is endotherapy. Become a stem cell donor with Match.
“Matching is genetic, so racial and ethnic background is an important factor in matching,” said Cindy Phippen, president of Be the Match. There are quite significant ethnic disparities.” ”
If Endo is unable to find a match, she risks developing a severe fungal infection, which can be fatal.
In order to donate stem cells, there are many other factors that need to be matched in addition to blood type. Be the Match uses a system that takes a swab from a potential donor's cheek and “types” the donor's immune system. This is a similar concept to blood type, but there are many factors involved, especially genetics. If someone requests a swab, the swab will be sent to them in the mail. Be the Match website.
Once the immune system is classified, the donor is placed on a list to be matched with others who need stem cells with the same immune system type. The problem is that someone can be on the donor list for years before being matched.
If Endo is able to match with someone, the difficult process will begin again.
Once a donor is found, Be the Match verifies the donor's willingness to help and has the donor undergo a physical exam and appropriate blood tests to ensure that their immune system is correctly typed. Donors are sent to the hospital or collection center that corresponds to where the recipient is (sometimes out of state) for the donation. Be the Match will cover all medical and travel expenses.
For Endo to receive stem cells, she said, “we basically have to completely destroy the immune system to make room for a new immune system.” To do so, she will undergo cycles of chemotherapy, radiation therapy, and immunosuppressive therapy. Stem cells will then be transfused and Endo's bone marrow will be closely monitored for improvement.
Whether Endo is able to get donations or not, she hopes something good can come out of her situation for others. She has seen many of her friends and family join her in registering. This could help other people in need of stem cells.
Phippen said Be the Match has a strong focus on attracting ethnically diverse donors by attending historically black colleges and finding communities of Asian Americans, Pacific Islanders and other groups. There is a team looking for it.
In 2022, Be the Match provided 6,700 bone marrow transplants across the United States.
For answers to frequently asked questions, more information, and to request a Be the Match cheek swab kit, please visit: bethematch.org.
