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Issue #43

BMT for Sickle Cell Disease
BMT Aids Seattle Victim of Sickle Cell Disease
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Bone Marrow Transplantation Aids Seattle Victim of Sickle Cell

By Brenda Eatman Aghahowa

She suffered a stroke. For weeks, her left side was limp and she couldn't talk. Experiencing a stroke and its usual effects is a lamentable occurrence, but one that is rather commonplace, right? Not when the victim is a 5-year-old.

Seattle native Olufeyi (oh-loo-FAY-yee) Ogunyemi was diagnosed with sickle cell disease at age 6 months and lived a very difficult life until bone marrow transplantation.

Before her transplant at age 10, frequent crises related to the disease resulted in painful joints and muscles. Olufeyi's life was dominated by doctors and medications.

"I was in and out of hospitals and had blood transfusions at the children's hospital every month," says the now-17-year-old.

The blood transfusions, given to help, actually resulted in an iron overload in one instance. To cure the problem the youngster endured two months of nightly shots in the buttocks, arms or stomach.

"I would get up in the morning and be really sore," she recalls.

She had constant fatigue, tired easily, and could not participate in normal children's activities, such running.

The first stroke came at age 5. "I was really lucky that I didn't come out paralyzed," remarks Olufeyi. At age 6, she collapsed after suffering a heat stroke.

"After that second stroke, the doctors were worried that a third stroke might be fatal. Everyone decided that I needed a more rigorous medical treatment, some kind of plan to control the disease," she explains.

Her mother, Olayinka, is a doctor's daughter and had worked in a hospital in her native Nigeria. She was certain that bone marrow transplantation could help.

Olufeyi became the first child enrolled in the world's first multi-center study to learn whether bone marrow transplantation could cure sickle cell disease.

While there were some earlier transplants in Europe, hers is the first of its kind in the United States, she reports.

The transplant, performed at Seattle's Fred Hutchinson Cancer Research Center in September 1991, was and still is considered a risky procedure for the cure of sickle cell disease. Yet, the family decided to give it a try as a last resort.

Olufeyi's older brother, Oludare, was a perfect marrow match, and was her donor. "He was a little nervous about it, and I was, too. But he went ahead and did it to save my life because it was the right thing to do," she says gratefully.

Her hospitalization lasted a full month. After her discharge, doctors constantly monitored her condition for four months during outpatient visits to make sure her body was not rejecting the new marrow. The going was rough initially and fraught with complications.

"At first, I was feeling really tired and not well," she says, indicating that she also suffered seizures, resulting in two hospitalizations.

But through the ordeal, as throughout her life, friends, family members and parishioners of an area Church of God congregation provided the faith and moral support she needed to persevere to a happy ending.

After about four months of rocky recovery, the risky procedure began to pay off, and has since changed the young woman's life dramatically for the better.

"I'm feeling really healthy now. No more hospitals!" she says joyfully.

"I can play tennis and basketball, and go swimming. I can participate in all sports," says Olufeyi, a senior at Seattle's Garfield High School.

Her extracurricular activities include participation in her school's Key Club, whose members do community service volunteer work in area homeless shelters, and is the Natural Helpers peer counseling group.

As a result of her experience, Olufeyi aspires to become a pathologist, and is considering Johns Hopkins University in Baltimore for college next year.

Would she recommend the BMT to others? She cautions that treatment and recovery are rough, and advises that one opt for this course of treatment only in very serious cases.

"They have made advances in bone marrow transplantation. I think it should be done in a really serious case [of sickle cell disease] like mine," she comments.




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