Closing The Gap: Sickle Cell Disease Awareness
JACKSON, Miss. (WLBT) - September is Sickle Cell Awareness Month.
You are probably wondering, what is Sickle cell disease? It is a genetic blood disorder that affects your red blood cells and can cause some major pain, among other problems.
More than 20 million people live with it across the world, and African Americans may face bigger challenges due to disparities in the healthcare system.
“A lot of people don’t know my story, and a lot of people when they see me say you don’t look sick,” Danielle Lewis.
Lewis is filled with emotion and tears as she talks about living with sickle cell.
The 20-year-old has been struggling with it her entire life, which she admits has been a nightmare.
“I remember telling the other kids that I had sickle cell disease, and I remember them backing away from me and was like, ‘Get away from me because I don’t want it.’ I had to tell them that it’s not contagious, it’s genetic,” she said.
People with sickle cell disease start to have signs of the disease during the first year of life, usually around five months of age.
SCD is the most common inherited blood disorder in the U.S., and it causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body.
People with SCD can experience infection, organ failure, anemia, and heart problems, just to name a few.
“Even the people with sickle cell don’t know how bad it could be,” Lewis said.
She says when sickle cells in her body began blocking blood flow to the vessels that provide blood to her bones the unthinkable happened.
“I ended up getting both of my hips replaced, and I have screws in my hands from Vascular Necrosis, and those are all the metal parts in my body right now,” Lewis said.
According to the CDC, it is estimated that:
- Sickle Cell Disease (SCD) affects approximately 100,000 Americans.
- Occurs in about 1 out of every 365 Black or African-American births.
- Occurs in about 1 out of every 16,300 Hispanic-American births.
- About 1 in 13 Black or African-American babies is born with Sickle Cell Trait.
“This is one of those diseases unfortunately until it is in your house you don’t care too much for it you don’t really want to know too much about it until you are affected by it. Let’s not wait until it is in your house,” said Natasha Roberts with The Mississippi Sickle Cell Foundation.
The Mississippi Sickle Cell Foundation says the numbers are also staggering in the state.
Roberts says the goal is to educate and increase awareness about sickle cell and also push to for more research to hopefully find a cure.
“A cure is very important. I encourage individuals until we get the cure to donate blood because blood is a big factor with individuals that have Sickle Cell Disease. Some individuals have to get blood every two weeks, three weeks, or every four weeks,” she said.
Sickle cell disease is almost a synonym for opioids, and we have to reverse that I’m physicians’ minds.
Dr. Veronica Carullo agrees.
She is the Director of Pediatric Pain Management at the University of Mississippi Medical Center, and she provides care for children with sickle cell.
“I will define sickle cell as a silent disease and there’s so many people like you and walk around with it, and they suffer silently,” she said.
Chronic pain is a very common symptom that many living with sickle cell have to manage.
Some have even become addicted to opioids because they are trying to fight the pain, including Lewis.
“As I began going to the hospital more and more I started needing medicine more and more frequently and I got addicted to taking the medicine,” said Lewis.
That is where the Children’s Sickle Cell Pain Management Program at UMMC’s Center for Integrative Health comes in.
The UMMC pilot program takes a holistic approach to wellness rather than just depending on opioids for healing.
“We come together once a month on Thursday afternoons, and when we offer comprehensive medical and pain evaluations to kids, adolescents, and young adults and chronic pain and sickle cell disease,” Dr. Carullo said. “We try to reverse some of the stigma and maladaptive behaviors that we as physicians create when we prescribe opioids that no longer work, and we try to offer them other alternatives.
“We offer physical therapy, something called cognitive behavioral therapy, which is thinking about your thoughts and your feelings, and how you can change your thoughts around those perceptions to have a more positive experience of pain,” she continued.
The program started back in 2021 and dozens have been helped since that time.
“Our success stories all look the same,” Dr. Carullo explained. “There are kids that come in with either frequent pain and frequent admissions most of the time on a lot of opioids and that have lost hope, they say why me many times don’t want to wake up in the morning and they have no hope. They then hear other people’s stories. We offer them education about sickle cell, pain, and mental health, and we give them tools to help them heal themselves.”
As for success stories, Lewis was able to get a Bone Marrow Transplant two years ago and is now sickle cell-free. Her mom was a match.
“I have been through a lot, and I am grateful to have my life back,” said Lewis
“Sometimes, we can’t take away their Sickle Cell Disease like we did with Danielle through a Bone Marrow Transplant, but we can offer them hope, we can offer them other alternatives that they have control over and that they can move forward within their lives with hope,” Dr. Carullo said.
Dr. Carullo and her colleagues hope to expand the UMMC pilot program to help more People with sickle cell disease who frequently need emergency medical care due to debilitating pain.
For more information about The Mississippi Sickle Cell Foundation, click here.
For more information about the Children’s Sickle Cell Pain Management Program at UMMC’s Center for Integrative Health, click here.
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