ROANOKE, Va. – Ensuring no one fights alone. The Carilion Clinic Sickle Cell Collaborative is holding a walk to honor sickle cell patients and their caregivers on Saturday.
Sickle cell disease is a rare genetic blood disorder that affects every aspect of a person’s life. Predominately impacting people of color, the disease has long been misunderstood by the community and even doctors. It’s also historically come with some unfair stigmas.
Sickle cell anemia is what Tenesha Dudley of Rocky Mount calls an invisible illness. You wouldn’t know it by meeting her, but she’s faced a lot of battles. “Right now it’s going ok. But It’s not easy. My life is not easy,” Dudley said.
Sickle cell complicates the simplest of tasks like getting ready in the morning. Meeting us at her doctor’s visit at Carilion in Roanoke was a process. Tenesha said when she wakes up it normally takes her about an hour to get her body fully aware before she can even start to get dressed.
“It literally takes me about two hours,” Dudley said.
In sickle cell disease, red blood cells become crescent or “sickle-shaped” due to a gene mutation. These sickled red blood cells don’t move easily and can block blood flow to the rest of the body. There is no universal cure.
“This is known as a disease that affects African Americans. They have historically been neglected by society and the health care system. So, to finally bring light to this disease, it’s huge,” said Carilion Clinic Nurse Practitioner Karen Marable. Sickle cell disease is hereditary. Tenesha’s son Isaiah has sickle cell too. When asked what it was like as an adult dealing with sickle cell and then having a baby and finding out he has sickle cell too, Tenesha quickly responded.
“Scary. Very scary. I’m glad I had my mom. She helped raise him. The times I was sick and, in the hospital, she would take care of him. And there would be times where both of us would be in the hospital, and she would be taking care of both of us.
In addition to attacks of severe pain known as pain crises, there are often severe complications. Tenesha has already survived two strokes. Her last happened during a pain crisis. I think I was on a ventilator for 5 days. but I stayed in the hospital 27 days. Then I had my second stroke at the end of April this year,” Dudley said.
“That was the scariest. Because cognitively she was there when we went in to see her that morning. Her eyeballs were huge and teary and she knew everything that was going on. And she was trying to talk but she couldn’t. That was the hardest,” said Marable. Karen Marable is Tenesha’s nurse practitioner. She is there to be her voice when Tenesha can’t speak. Marable is passionate about her sickle cell patients and ensuring they get the care they need and deserve. Many have her cell phone number and are welcomed to text her when they are in need. “We are more like family,” Marable said. She said there are generation stigma’s that still exist about sickle cell.
“I had a woman just this week who said oh my goodness when I was growing up, I never told anyone I had sickle cell disease. It was known as bad blood,” Marable said.
Unfortunately, those stigmas can expand to the medical field because sickle cell isn’t a common disease that every medical professional understands.
“A lot of practitioners look at our patients like they are drug seeking. No, they have chronic pain. Their organs are damaged. Their bones are damaged. They have chronic pain,” Marable said.
Dudley said she has experienced this frustration firsthand. “I’ve been at the emergency room in a sickle cell crisis. I know what I need and what medicine will help me. They still won’t give me the medicine,” Dudley said.
The medicine is a certain type of painkiller. It’s common for sickle cell patients in a pain crisis to go to the emergency room. In fact, one of Carilion’s patients who had the second-highest number of emergency room visits last year was a sickle cell patient.
“So, decreasing that stigma is probably the most important aspect for me,” Marable said.
That’s why Carilion created the sickle cell collaborative.
“The host of problems that sickle cell causes is what leads to numerous barriers. That is why we needed a team. We needed a multi-disciplinary team to address all of the issues, eye issues, pain management, hematology for obvious reasons. Our social worker and community health worker for the social aspect,” Marable said.
Callyn Trent, a community health worker is part of the collaborative, acting as an advocate to ensure patients have what they need.
“Things like access to healthy food, do you have transportation to get to your medical appointments? Do you need help with your finances so these things can get paid for and ultimately uplift your health,” Trent said. She has even helped one patient create a job resume. The Collaborative even has patient get-togethers. WSLS was there as a patient threw out the first pitch at a Salem Red Sox baseball game. “We are giving them a community where they can talk about it,” Marable said.
In addition to patient care, Marable said another important part of the work they are doing is data collection. She said in the medical community, there isn’t enough patient data for sickle cell disease. Carilion cares for about 120 sickle cell patients in Southwest Virginia. Patients range from pediatric to their oldest patient who is 72.
“If you look online and google the oldest Virginian with sickle cell disease it does not say our patient. I think it says someone that is about 69 years old. That’s part of what our program is doing as well is tracking the data. Because data has never been followed in this population. It has never taken a priority unfortunately and it finally is,” Marable said. The collaborative is ensuring better access to care, reducing the stigma and raising awareness about the disease. “People with sickle cell are human and even though we may look normal we are still fighting an invisible illness that doesn’t have a cure,” Dudley said. “Raising awareness for sickle cell anemia is very important to e because it allows for early diagnosis and treatment. It will also help reduce the stigma and misunderstanding which comes along with having sickle cell anemia due to the amount of pain medication that the patient has to have.”
Dudley remains active in the community to shed light on the disease.
“Raising awareness over a broad horizon will bring better understanding and adequate healthcare to better assist individuals with this disease.”
The collaborative is holding a walk to raise awareness about sickle cell and to recognize local patients and their caregivers. The walk is on Saturday from 9 a.m. to 11 a.m. at Carilion Clinic Riverside Campus.