Duane Love lives in Fort Wayne, but distance did not stop him from attending The Martin Center Sickle Cell Initiative’s 2019 Indiana Sickle Cell Conference in Indianapolis on April 26. As someone who has sickle cell disease, Love feels it’s important to attend as many sickle cell events as possible.
“I try to make all the conferences, at least all the sickle cell conferences,” Love said.
The conference featured presentations by experts who shared the latest science regarding sickle cell disease as well as coping strategies for those living with the disease.
For those unfamiliar with sickle cell disease, James Taylor, professor of medicine at Howard University and director of the university’s Center for Sickle Cell Disease, explained the disorder distorts red blood cells into a shape resembling the end of a farming sickle, reducing the body’s ability to transfer oxygen thus creating inflammation, sensitivity to touch and pain. Even rubbing a paintbrush against a hand could cause a sickle cell patient pain. The only possible cure for sickle cell is a bone marrow transplant, so doctors are often unable to cure sickle cell. Most of the time, physicians focus on managing symptoms by prescribing pain medication.
“If I need to give you an opioid, I’ll see you frequently,” Taylor said. “Other than that, if you are not on any treatments or you don’t need opioids very often, I’ll see you twice a year because I have nothing to offer you. It’s a really sad [situation].”
Taylor also shared lesser-known scientific findings, such as the complicated relationship between sickle cell disease and opioids. Opioids are an important part of combating pain in sickle cell patients, with nearly 100% of sickle cell patients using opioids at some point. However, people can develop an addiction within three days of taking opioids, so Taylor said doctors must both strike a balance between addressing pain and preventing addiction and become more involved monitoring the prescriptions of patients on opioids.
“I’m not talking about withholding opioids,” Taylor said. “I’m talking about treating true addiction and pain and sickle cell disease simultaneously, which is a fine balance.”
Keynote speaker Marsha J. Treadwell, a psychologist and director of the Northern California Network of Care for Sickle Cell Disease, focused less on the biology of the disease and more on how patients can maintain a healthy mindset. For example, she suggested the family of patients use sensitive language, avoiding terms such as “bad blood” to describe sickle cell.
For sickle cell patients, Treadwell said spiritual activities such as praying and going to church can help patients handle pain. In addition, Treadwell recommended sickle cell patients foster healthy thinking through relaxation and meditation or just taking the time to be still and take a breath.
“Sit and notice what’s happening to you right now, that the room is warm or that the chair is comfortable or that there is a low hum,” Treadwell said. “… We don’t judge it as negative or positive. It’s just there. That kind of awareness brings us into the present moment, and that’s important because we aren’t anticipating pain. We aren’t participating negativity but rather are just present in this moment and time.”
Attendees networked between presentations, swapping tips for dealing with the disease such as finding the best physicians to visit and how to explain the disease to someone who doesn’t have it. In addition to the educational experience, the conference also featured physical comforts for those affected by sickle cell disease. For example, the room was warm and blankets were available because sickle cell disease patients are sensitive to the cold.
“People don’t understand the severity of the pain that we’re in, Love said. “My pain could be at 11, but I could have a face of someone that’s a normal person, like I’m not in pain at all. It’s because I’ve been going through it all my life, so I’m pretty much used to it.”
Contact staff writer Ben Lashar at 317-762-7848. Follow him on Twitter @BenjaminLashar.
Support for sickle cell disease
For sickle cell support and resources, visit The Martin Center Sickle Cell Initiative, 3545 and 3549 N. College Ave., themartincenter.org, or call 317-927-5158 or email Information@TheMartinCenter.org.