Suburbanite’s plight highlights need for Latino bone marrow donors
After three years of living with a debilitating bone marrow disease, Neftali Hernandez is hoping to find a bone marrow donor so he can start living a normal life again, working and supporting his family.
But despite four siblings, a national registry of 10.5 million potential donors and multiple donor drives in the suburbs, Hernandez, 35, has been unable so far to find a match.
The former Des Plaines man’s plight highlights the need for more Latino bone marrow donors, says the group helping Hernandez in his search.
The chances of finding a suitable match are greater within the same race or ethnicity, said Mariana Sgarbi, Illinois recruitment and community development specialist for The Icla da Silva Foundation.
“That’s because our tissue types, they are inherited, so it’s much more likely that a Hispanic or a Latino will have a match from their own race,” Sgarbi said.
Hernandez suffers from aplastic anemia, a disease damaging the blood stem cells inside the bone marrow causing a deficiency of red and white blood cells, and platelets. Hernandez initially underwent chemotherapy, which failed to kill off the disease.
The illness has left Hernandez feeling fatigued and unable to work, and puts him at higher risk of contracting infections and uncontrolled bleeding from wounds. A bone-marrow transplant is the only solution.
Originally from Oaxaca, Mexico, Hernandez came to the United States in 1992. Before being diagnosed in 2010, he worked a variety of jobs as a roofer, landscaper and restaurant hand.
“Now my dad is going to start work doing landscaping,” said Hernandez, who now lives with his uncle, Abel Montesinos, in Niles while receiving blood transfusions twice a week at John H. Stroger Jr. Hospital of Cook County.
“We always take care of him,” Montesinos said, adding that Hernandez’s illness has been hard on the entire family. “We didn’t expect to have this kind of problem.”
The Long Island, N.Y.-based Icla da Silva Foundation recruits potential donors for the National Marrow Donor Program’s Be The Match Registry. In 70 percent of cases, most patients in need of a transplant don’t find a matching donor within their own families, Sgarbi said.
“So they have to depend on the Be The Match Registry to find a match,” she said. “Hispanic or Latino patients have a 72 percent likelihood of having a donor on the registry who is willing and able to donate.”
Within the last month, the foundation has organized three donor drives for Hernandez targeting the Des Plaines-area Latino community. The most recent drive was Saturday at St. Mary Parish in Des Plaines during its Spanish Mass. It takes six weeks to eight weeks after a drive for new donors to make the registry.
“It’s not that quick,” Sgarbi said.
“The swab kits are sent to the labs. After that, it goes into the database of the National Marrow Donor Program. We actually don’t know yet if somebody from those drives came out compatible.”
Though he is sad about his condition, Hernandez said he is encouraged by the number of people who have participated in the drives and is hopeful of finding a match soon.
Of the 10.5 million registered donors on the database, about a million identified themselves as Hispanic or Latino in 2012.
But none of them matches Hernandez.
“We need registry members of all ancestries, but especially those from any minority group where we have more challenges finding an optimal match,” said Willis Navarro, medical director of transplant services for the National Marrow Donor Program and Be The Match.
“The important thing is that the more people who join the Be The Match Registry, and the greater the diversity of tissue types available, the better the chances of finding a match will be for all patients of all backgrounds.”
More than 626,000 new registry members were recruited in 2012, according to the National Marrow Donor Program.
Sgarbi said the foundation will continue to host drives for Hernandez and others in similar circumstances looking for potential matches.
“We keep doing (drives) because the more the better,” Sgarbi said. “It helps the family. It helps the patients know that we are doing something for them.”
What you should know to be a bone marrow donor
Ÿ To sign up for the National Marrow Donor Programs Be The Match Registry, donors must meet age and health guidelines and be ready, willing and available to donate to any patient in need.
Ÿ Registration involves completing a health history form and giving a swab of cheek cells. You can join the registry in person at a donor registry drive in your area or online at <a href="http://www.BeTheMatch.org">BeTheMatch.org</a>.
Ÿ Patients are most likely to match someone of their own ancestry, though not always.
Ÿ People ages 18-44 years are called to donate more than 90 percent of the time. More young people of diverse racial and ethnic heritage are needed.
Ÿ It can take 6 weeks to 8 weeks or even a few months for someone to be listed on the registry after joining, depending on the time for tissue samples to be processed and tested.
Ÿ In 80 percent of cases, the donor is asked to go to a blood center, clinic or hospital for the transplant procedure. Doctors may choose to take the donors blood and extract stem cells from it through a machine or insert a syringe to extract bone marrow directly from the donors hip, which requires general anesthesia.
Find out if you can be a bone marrow match for Neftali Hernandez.
Order a kit to register as a bone marrow donor at <a href="http://marrow.org/Join/Join_Now/Join_Now.aspx?promo_code=Neftali">http://marrow.org/Join/Join_Now/Join_Now.aspx?promo_code=Neftali</a>.
For more information about the Bone Marrow Donor Recruitment Center, visit <a href="http://www.icla.org">icla.org</a>.
Source: National Marrow Donor Program