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Can you be Ali's match?

Posted August 23, 2016 11:00 pm

Renee Trappe

Ali Gerlach is tired.

Not the kind of tired that comes at the end of a long day, but the kind of tired that dogs her every day, all day - a deep-seated fatigue that saps her energy even when her spirit is willing.

Gerlach has Myelofibrosis, a rare blood disorder in which scar tissue forms in her bone marrow, impeding its ability to produce normal blood cells.

"The fatigue was so bad, after I ate lunch at school I was done, I couldn't think clearly," the Steeleville mother of two, and a special-education teacher, said. "It wasn't just tiredness, it was fatigue."

Gerlach initially thought she might have an underperforming thyroid. But blood tests in May revealed myelofibrosis.

Today, other than the tiredness, she bruises more easily and her spleen is slightly enlarged.

Other than that, knock on wood, she so far has been spared many of the side effects that come with myelofibrosis.

Gerlach is not yet at the most debilitating stage in her disease. When she gets there, her only hope is a bone-marrow transplant.

It is with that in mind that the Gerlach family - Ali and Andy, and their kids, Chloe and Drew - are hosting a bone marrow drive from 10 a.m. to 2 p.m. on Sunday, Aug. 28, at Steeleville American Legion Post 480, 303 S. Chester St.

Friends, family and complete strangers between the ages of 18 and 44 are asked to stop by and have a swab taken from inside their cheek.

That swab will be tested against Ali's, and 14,000 other people currently on the Bone Marrow Registry.

"We want to find a match for (Ali) and for everybody else," said Andy.

A couple weeks ago Ali Gerlach went back to her job, teaching in the Perandoe special education district in Tilden.

Andy says she's often in bed by 7:30 or 8 p.m., but that isn't what bothers her the most. It's the time she's lost supporting Drew and Chloe.

"Normally, I don't miss a kid's sporting event," she said. "If they are both playing on the same night I'll drive 50 miles to do both games.

"When I was diagnosed this summer my son was playing basketball and my daughter pitched on a slowpitch team. I never went to one game."

When a swab sample is taken, 10 antigens in the donor's cells are mapped. Those antigens are then run against the antigens of patients on the Bone Marrow registry.

A 10 for 10 match is the best possible outcome. But lesser matches can work, too.

Ali Gerlach's daughter, Chloe, matches her mom in six of 10 antigens. That means she's the backup donor, in case her mom's condition deteriorates to the crisis point and no better matches are found.

Doctors prefer to match nine or 10 of the antigens between donor and patient, but a new protocol allows them to do what they call "half" transplants, where a 5 out of 10 match can be used.

It is so far proving successful, but there's no long-term research. The matching process is based on your race and your DNA, not your blood type.

"The chances are slim to none of finding a match for Ali at their drive, but they are paying it forward," said Denise Mosley, community engagement representative for Be The Match.

According to Mosley, 12.5 million Americans are registered. 61 percent are Caucasian, which is why Caucasian patients have a 97 percent chance of finding some kind of match, although not always a perfect one.

The registry is desperate for other races and ethnicities to become donors. With mixed race patients, finding a match is even harder.

Once you are on the registry you stay there until you are 61, when you drop off.

Recently, the age window for donors has narrowed. Research has shown that patients react better to younger stem cells, so the preferred donor age now is 18 to 44.

Women who have never been pregnant are also more successful donors than woman who have had babies.

Mosley said the "dream" donors are males, 18-24, which explains Be The Match's aggressive outreach to college campuses.

Being a donor costs nothing, but to process each person's DNA sample costs the agency about $100. If you are on the registry and need to update your contact information, call (800) MARROW2, or (800) 627-7692.

It's unknown how long Gerlach has before her condition becomes critical. Her oncologist told her people can live with myelofibrosis 15 years before their condition worsens, but Gerlach has been living with a precursor disease, essential thrombocythemia, since being diagnosed in college.

That may mean there is less time.

"It's a fine line," Ali Gerlach says. "You don't want to do it while your quality of life is still good."

It's not a low-risk operation. Patients undergo chemotherapy beforehand to kill the damaged or diseased cells.

After the procedure, when the risk of infection is acute, patients have to stay in germ-free hospital rooms. Some patients develop a form of leukemia.

The Gerlachs are taking their bewildering new life one day at a time. There is no medicine, no pills, nothing to help Ali feel better.

"There's nothing you can do," says Andy. "This is what is really weird."

Still, he did what he could - which is to organize Sunday's drive.

They know that Sunday's drive may not produce a match for Ali Gerlach. But it might produce a match for someone else.

And maybe, a match for Ali will be found elsewhere on the continent.

"There's no point in crying about it," Ali says resolutely. "I hope this brings awareness."

How you can be a match

Bone marrow drive, 10 a.m.- 2 p.m. Sunday, Aug, 28 at Steeleville American Legion Post 480, 303 S. Chester St., Steeleville.

• How long donation takes: About 15 minutes

• Can I eat or drink normally ahead of time: Yes. There are no restrictions.

• Will I get poked by a needle? No. A cheek swab is all that’s needed, and you do that yourself.

• Rain or shine? You bet.

• More info: BeTheMatch.org/AliGerlach

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