Julie Marion remembers vividly how sickle cell disease (SCD) made an early impact on her life.
As an elementary school student growing up in Fort Wayne, she could not go outside and play with her classmates and friends during winter months. Cold temperatures can often become a trigger for symptoms of SCD.
“My mother would send a note to school every year to let them know that I was not to go outside when the temperature started dropping,” Marion said. “So I would spend my recess inside while the other kids were outside.”
At home, she asked several times to play in the snow until her mother relented.
“She was like ‘OK, if you want to go that bad, go ahead,’” Marion recalls. “Sure enough, I had a painful crisis afterward and learned my lesson.”
Marion is among the more than 100,000 Americans who are managing their lives with SCD, also known as sickle cell anemia, a genetic blood disorder in which red blood cells form an abnormal sickle or crescent shape (red blood cells, which carry oxygen, are normally disc-shaped).
This causes the body to produce abnormal red blood cells that cannot carry normal levels of oxygen. SCD can complicate life by causing intense pain in the chest, joints and bones, jaundice, infections, damage to organs and tissues and swelling in the hands and feet of children.
1 in 500 Blacks has SCD
SCD can be fatal, with many patients not living past their early 50s. According to the National Institutes of Health, one out of every 5,000 Americans has the disorder, with a higher prevalence among African- Americans at one out of every 500.
“A lot of people, even in the minority communities, don’t know what sickle cell is, and don’t see themselves as affected by it,” said Marion, who now works as director of operations for the Martin Center in Indianapolis. “It’s not something that just affects a few people. It has a major impact on over 1,000 people in Indiana and millions worldwide.”
For over four decades, the Martin Center, a human service agency, has used education, outreach, school partnerships and advocacy to raise awareness of SCD.
The Martin Center’s programs include counseling, information, hospital visits, a food pantry, referral services and support groups for sickle cell patients and their families.
In Indianapolis, local organizations have been preparing a strong awareness push for September, which is Sickle Cell Awareness Month.
SCD can be debilitating
Kisha Braswell, Sickle SAFE program coordinator for the Indiana Hemophilia and Thrombosis Center, said many people don’t understand how debilitating SCD can be.
“A lot people become disabled and are not able to work because of the intense pain,” Braswell said. “We’re reaching out to the community to educate everyone on what people with Sickle Cell are going through.”
Sickle-cell traits are inherited from parents in much the same way as blood type, hair color and texture, eye color, and other physical traits.
Scientists are not sure of the exact origins of SCD, but believe it was developed as the result of a gene mutation that occurred in some people as a protection mechanism against malaria more than 1,000 years ago.
Due to SCD’s high prevelance among individuals of African descent, some people may assume that it primarily affects the Black community.
“That is a misconception,” Marion said. “It has been common anywhere that malaria was present, so that includes those whose ancestors are from certain areas of Asia, Latin America and Europe where malaria once had significant presence.”
Positive developments
Over the last 30 years, medical experts have made advancements in treatments for SCD, increasing the average life expectancy of those with the disease from the 20s to the late 50s and early 60s.
“It is being diagnosed earlier, and therefore, treatment can begin sooner. As long as the person stays with that treatment and they transition well into adulthood they can live a longer life,” Braswell said. “In the early ‘80s, a person with sickle cell was doing well if they lived past the age of 14. The life span has increased three or four fold.”
Still, both Marion and Braswell said more work needs to be done to help ease the physical, financial and emotional pain of those with sickle cell and their families. Their organizations are encouraging the community to support programs dedicated to sickle cell treatment through donations and volunteering, and to donate blood and bone marrow, since many people with SCD must often undergo transfusions.
In addition, Braswell, who became passionate about SCD awareness after meeting people who have fought the disease, encourages everyone to know their blood type and as much family history as possible to know if they carry the traits of SCD.
“I often say to parents, ‘if you don’t know who your grandmother or grandfather is to the hundredth power, you really don’t know what you have in your genes, or if you have a trait that can be passed down,” she said.
As part of Sickle Cell Awareness Month, the Martin Center is having initiatives such as Dine Out for Sickle, in which participating restaurants will donate proceeds to SCD programs when patrons who express awareness of the disease. In addition, it will host its Annual Awards Banquet at the Madame Walker Theatre on Sept. 20.
The Indiana Hemophilia and Thrombosis Center will host its 4th Annual Sickle Cell-Abration, featuring several music acts, on Sept. 22, also at the Madame Walker Theatre.
Marion believes the community can overcome SCD if it rallies around the people who have it.
“We should be a community that stands together, not just for this, but for every issue that affects us,” Marion said. “Even if one thing affects just some of us, it really has an impact on all of us.”
For more information about the Martin Center, visit themartincenter.org, or call (317) 927-5158. For more information about the Indiana Hemophilia and Thrombosis Center, visit ihtc.org or call (317) 871-000.
MAKE A DIFFERENCE
What: Martin Center Annual Awards Banquet
Including: Live music, dinner and silent auction.
Purpose: To honor those raising awareness.
When: Sept. 20, 6:15 p.m.
Where: Madame Walker Theatre, 617 Indiana Ave.
For more information, visit themartincenter.org or call (317) 927-5158.
Fun with awareness
What: Sickle Cell-Abration
Featuring: The Downstroke Band, Krash Krew (dance group) and rapper B The Messenger.
Purpose: To raise awareness of sickle cell disease
When: Sept. 22, from 6 to 9 p.m.
Where: Madame Walker Theatre, 617 Indiana Ave.
Cost: Free. For more information, visit ihtc.org or call (317) 871-0000.
Well-known individuals with sickle cell disorder
Miles Davis – musician
Tionne “T-Boz” Watkins – singer (TLC)
Tiki Barber – Pro football player
Larenz Tate – Actor
Prodigy – Member of rap group Mobb Deep
Ryan Clark – Pro football player
Paul Williams – Singer (The Temptations)
Georgeanna Tillman – Singer (The Marvelettes)
