Imagine feeling like you’re drowning while thousands of needles are stabbing into your bones. Imagine trying to stay calm, but all you can think about is the pain. Imagine, while this is happening, that you are afraid to go to the hospital because you worry they might not believe you.
That’s how James Capers, 32, describes his sickle cell pain crisis. The Baltimore City resident says he has found peace by attending a free support group for people suffering from sickle cell disease.
“The meetings are honest,” Capers says. “You get a better understanding of what sickle cell is and what we’re up against. We explain our frustration and hurt and try to help each other make our situation better.”
Sophie Lanzkron, director of the Johns Hopkins Sickle Cell Center for Adults, says the center worked with the Maryland Sickle Cell Disease Association to organize the support group.
“It’s important to know that sickle cell disease continues to be a problem,” Lanzkron says. “It’s a devastating disease and the support group can help patients, families and friends understand that they can still live full, wonderful lives.”
Lanzkron runs the only comprehensive sickle cell program in the state of Maryland for adults. The center serves about 550 adults with the disease.
“We provide the typical outpatient hematology care, routine sickle health maintenance and pain management,” Lanzkron says. “We also have an infusion clinic that’s open seven days a week. We’re staffed not only by advanced practice providers and nurses but also by social workers and community health workers.”
Lanzkron says it is “really important that every person with sickle cell disease gets specialized care.” Even people who think that they have only a mild form of the disease need to see a hematologist at least once a year.
“Adults who think they might be doing OK and feel fine because they lived this way their whole lives don’t realize their organs aren’t happy and may be harmed,” Lanzkron says.
Lanzkron says sickle cell disease can still result in early mortality. Patients with the most severe forms may only live into their 50s. Their lives are often interrupted by episodes of pain, and it is challenging to get through school or stay employed.
Hydroxyurea, a bone marrow suppression agent, is a very effective drug proven to reduce the frequency of painful episodes, Lanzkron says. It can usually decrease the rate of painful episodes by 50%.
Nikia Vaughan, a Johns Hopkins communications coordinator and community health worker, says despite a sickle cell diagnosis “you can do anything you want in life if you have the support, get the information and do what you’re supposed to do.”
Anyone with sickle cell, their caregivers or their providers are welcome to participate in the support group. The next support group will be held Sept. 26, from 5–7 p.m. at The University of Maryland.
“When we have support groups, we let the patients lead,” Vaughan says. “In our group, people come together to discuss their wins, their losses and their needs. They can champion each other. After time, they feel comfortable to express themselves. We cry, we laugh and it really feels good at the end to see that they can open up in a way they haven’t opened up before. It’s like a little family.”
Vaughan, whose daughter and husband both have the disease, says even though sickle cell is one of the oldest genetic diseases, many patients still feel stigma. She says when people who are living with sickle cell disease seek care, they can be misdiagnosed as drug-seeking.
“It’s important for providers to know how to treat sickle cell,” she says. “Providers are welcome to come to the group and learn more.”
Vaughan says the group helps members to build self-esteem.
“They know they’re not alone and they can live life just like anyone else,” Vaughan says. “I feel positive that with more grant funding, more research and more awareness, one day we’ll ultimately have a universal cure. The future is bright!”