At 70 years old, Cleo Camphor is seriously beating the odds for someone living with sickle cell disease.
“I’m blessed because the doctor said I wasn’t going to make it to 20,” Camphor said. “I got two brothers done passed with sickle cell, and I’m still hanging on.”
Many people with sickle cell disease don’t live long lives. Life expectancy for a man with sickle cell disease is 42; it’s 48 for women, said Gary A. Gibson, president and CEO of Martin Center Sickle Cell Initiative. In addition to a short life expectancy, the pain from sickle cell disease often disrupts daily activities. Only about 33 percent of sickle cell disease patients advance further than a high school education. That lack of independence and lack of understanding by society often takes an emotional toll, Gibson said.
While Camphor was able to work and retire from Colonial Bakery, he often missed work because of a sickle cell crisis, a pain event that can last from several hours to weeks and could require hospitalization. In fact, Camphor was in pain on the day of this interview.
“Today I’m hurting real bad,” said Camphor, who makes no bones about the need to raise not only awareness of sickle cell disease, but more money for research. “When the weather changes that’s when I really hurt in my back and legs.”
In the past research for sickle cell disease was lacking, however, changes are underway as pharmaceutical companies are developing about 30 different medications to treat sickle cell disease, Gibson said.
“There are really good things going on,” Gibson said. “I think it’s important to note that this is the best time ever for sickle cell disease. There is more interest on many levels where we see activity. We see action relative to trying to find a cure.”
It’s estimated that there are 100,000 Americans — of all ethnicities — living with sickle cell disease — an umbrella term that covers the various forms of the disease. Sickle cell anemia is one form of sickle cell disease.
As pharmaceutical companies continue to research treatment and search for a cure for everyone, a bone marrow transplant does cure the disease for some. However, a transplant is only possible with a matching donor.
“A full sibling can act as the donor for the bone marrow cells,” Dr. Emily Meier, a pediatric hematologist at Indiana Hemophilia and Thrombosis Center, said. “Not everybody has a donor. Only about 20 percent of kids have a full sibling who matches.”
Contact Editor Oseye Boyd at 317-762-7850. Follow her on Twitter @oseye_boyd.
Upcoming events
Martin Sickle Cell Initiative will host an educational event to learn more about sickle cell disease as well as a blood drive.
- Sickle Smart Event — 1 p.m. Sept. 15 at Marriott East, 7202 E. 21st St.
- Sickle Cell Blood Drive — 10 a.m.- 2 p.m. Sept. 22 at Citadel of Faith Church of God in Christ, 7676 E. 38th St.
Cleo Camphor
