Sickle cell camp provides opportunity for sufferers to see they’re not alone
By Ryan McGeeney
U of A System Division of Agriculture
June 16, 2017
- Sickle cell disease is rare, affecting about 100,000 Americans
- Camp allows attendees to meet others with similar conditions
- 4-H Center facilitates camps that bring in youth from around the state with indoor, outdoor and overnight facilities
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FERNDALE, Ark. – Almost by definition, summer camps offer visiting youth the chance to do things they just aren’t normally going to get to do in their day-to-day lives: Constructing rockets from water bottles, canoeing and zip-lining, to name a few. But for kids attending the Sickle Cell Support Services camp, now in its ninth year, the five-day camp offers something more: The opportunity to see that although they may suffer from a rare disease, they are certainly not alone.
In the United States, sickle cell disease — sometimes referred to as sickle cell anemia — occurs in approximately one of every 365 African-American births, and approximately one out of every 16,300 Hispanic-American births, according to the U.S. Centers for Disease Control and Prevention. It affects approximately 100,000 U.S. citizens. The disease causes red blood cells to form into the shape of a sickle, occasionally clogging blood vessels and causing pain, infection, stroke or other problems, according to the CDC.
LaKisha Johnson, who founded the camp with her husband, Germaine, in 2008, said the somewhat obscure nature of sickle cell disease can leave sufferers with a sense of isolation.
“Sickle cell is still considered to be a rare disease,” Johnson said. “Most of these kids don’t know anyone else who lives with the disease — or at least don’t know that they do, because it’s also a very private disease. People won’t tell you if they have the disease. So you may be in school with someone who also has the disease, without any clue that you’re not alone.”
One of the camp’s counselors is also one of its oldest attendees. Sam Johnson (no relation to LaKisha Johnson), attended the camp’s inaugural session in 2008 at the age of 10.
“I’ve always been involved in the sickle cell camp,” he said. “When I first came to the camp, I didn’t know anybody else who had it, I didn’t know anything about it. And I can tell you, one of the things that comes with disease is depression — and uncertainty.”
Johnson said he benefitted by the availability of professional counselors through the camp — Professional Counseling Associates has consistently partnered with the camp over the years — and that he’s seen those same benefits reflected in the successive generations of youth who have attended the camp after them, especially those who return year after year.
“I’ve gotten a whole lot better. And a lot of these kids have gotten a whole lot better, compared to where they were when they first started coming to this camp,” he said. “The camp really gives you the chance to just be a kid. Not having to worry about being sick all the time, or having my friends treat me differently because I have sickle cell, but just be around other kids like me, and I can just be myself.”
Lakisha Johnson said that she and her husband, who died of sickle cell complications in 2014 at the age of 41, found the 4-H Center to be a good fit to host the camp because it offers both vast outdoor spaces and indoor facilities, which are important for sickle cell sufferers.
“I love the 4-H Center, because these kids can’t always do traditional camp settings,” Johnson said. “If the weather is too cold or too hot, it can cause them to go into a sickle cell crisis.”
Shannon Caldwell, 4-H Center Program Coordinator, said staff with the center facilitate 14 sessions of day camps and 21 sessions of overnight camps each year. The Sickle Cell Support Services Camp, like many camps which host children from around the state, is an overnight camp. In 2016, the center worked with about 270 groups and more than 9,400 individuals.
“The camp setting helps campers realize they are resourceful, skillful, and valuable as an individual,” Caldwell said. “Providing opportunities for campers to grow in their confidence, independence, resilience, and compassion, in a positive environment, is what 4-H does every day.”
To learn more about Sickle Cell Support Services, visit www.arscss.org.
To learn more about Arkansas 4-H and the 4-H Center, contact your local Cooperative Extension Service agent or visit www.uaex.edu.
About the Division of Agriculture
The University of Arkansas System Division of Agriculture’s mission is to strengthen agriculture, communities, and families by connecting trusted research to the adoption of best practices. Through the Agricultural Experiment Station and the Cooperative Extension Service, the Division of Agriculture conducts research and extension work within the nation’s historic land grant education system.
The University of Arkansas System Division of Agriculture offers all its Extension and Research programs to all eligible persons without regard to race, color, sex, gender identity, sexual orientation, national origin, religion, age, disability, marital or veteran status, genetic information, or any other legally protected status, and is an Affirmative Action/Equal Opportunity Employer.
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Media Contact: Mary Hightower
Dir. of Communication Services
U of A Division of Agriculture
Cooperative Extension Service