September is National Sickle Cell Awareness Month and Carter BloodCare is honoring those living with Sickle Cell Disease (SCD) by raising awareness and amplifying their stories.
What is Sickle Cell Disease (SCD)?
Also known as sickle cell anemia, SCD is a group of inherited red blood cell disorders that causes the red blood cells to become C-shaped, instead of round. The sickled red cells also die earlier than regular red cells, which causes a constant shortage of red blood cells, resulting in anemia. When sickle cells travel through small blood vessels, they can clog blood flow, which leads to frequent hospitalizations to manage the damage caused by these cells.
How does Carter BloodCare fit into the fight against SCD?
Carter BloodCare’s mission – “We save lives by making transfusion possible” – is accomplished through the collection and distribution of blood products to hospitals. However, our duties go far beyond that. Carter BloodCare also indirectly helps patients with specific community health challenges for which blood is a treatment, like SCD. One of our longtime initiatives has been to increase the number of diverse blood donors, particularly in the Black community, so that sickle cell patients receive the best blood transfusions to manage their disease.
To kick off National Sickle Cell Awareness Month, we’re introducing Kelly Bernard, an ICU nurse living with Sickle Cell Disease.
In the following interview, Bernard shares her experience with SCD in her personal life and career, important SCD considerations people inside and outside the healthcare industry should know, and her encouragement for those who can make a difference in sickle cell patients’ lives through blood donation.
How did your journey with SCD begin?
KB: “I was diagnosed as a baby. I didn’t really have any pain crises or symptoms in my early years. However, when I was four years old, I had a stroke that resulted in a permanent limp in my left leg. Subsequently, the doctors put me on a regimen of a blood transfusion every month. So from the time I was four until about 14 years old, I was having monthly blood transfusions.
As I got older, the frequency of my blood transfusions lessened to every six to eight weeks. In my junior or senior year of high school, I started getting red blood cell exchange (RBCE) procedures.
Thanks to donors, since the age of four, I’ve received over 1,200 units of blood.”
What is the purpose of receiving the RBCE procedure?
KB: “It was used to decrease the amount of iron that was building up in my body. The doctors would give me new blood and take out my blood at the same time through the apheresis process. I still get those to this day, and it will be a lifelong treatment for me.”
What does the procedure feel like?
KB: “Now that I’m getting the red blood cell exchange, I actually feel energized afterwards. I like to tell people I’m going to get my “fill.” During the actual procedure, I don’t feel anything. Afterwards, I’m a little tired, so I’ll go take a nap, but after that I feel reenergized and good to go for the next six to eight weeks.”
Does RBCE help with the pain crises?
KB: “Yes, they do. In fact, I only had one crisis, several years ago in 2013. I just had surgery, so my RBCE procedure was off schedule and I ended up having a crisis, but that’s the only one I’ve had to my recollection.”
Can you describe what that pain crisis was like for you?
KB: “It started towards the end of my shift at work. It felt like muscle cramps in my left leg. It was very strange and it came out of nowhere. It was towards the end of the day, so I figured, “I’ll just bear through it.” Then I noticed the pain traveling over to my right leg, so much so that I couldn’t really walk. I called my mom to come pick me up and take me home and it got much worse. The spasms started traveling up to my arms, so I had horrible pain in my arms and legs. I can’t even describe to you the severity of the pain. I ended up going back to the hospital and was admitted for a week to recover.”
What was your hospital experience like when you were admitted for the pain crisis?
KB: “A lot of times, there’s such a stigma about sickle cell patients and drug seeking. When I got to the emergency room, the doctors didn’t want to give me high doses of medication, which I understand. You want to be cautious, but, at the same time, I was in pain and had never experienced that type of pain before. It kind of felt like they were experimenting with the medication they were giving me until we got to a place where I could eventually get some sort of pain relief.”
Let’s talk about stigmas: What are some common myths/attitudes about SCD inside and outside of the healthcare industry that we need to get rid of?
KB: “When someone is in pain, believe they’re in pain. Everybody’s pain doesn’t look the same. I could be on my phone looking at whatever, but I’m still in severe pain. Just because I don’t “look” like I’m in pain, doesn’t mean I’m not. I wish that more healthcare professionals and physicians would treat pain according to what the patient is verbalizing, and not making assumptions that the patient just wants access to drugs.”
“Also, and this isn’t my personal experience, but I’ve been around other people living with sickle cell and one common complaint they have is that people assume they’re lazy or just don’t want to work. They have pain crises often, which cause them to not be able to work and have to quit jobs. The common perception is, “Oh, that person is lazy; they didn’t want to be here anyway.” That’s not the case at all.”
Did your experience with SCD influence your decision to become a registered nurse?
KB: “Yes, I had some very awesome nurses when I was a kid that made me go, “Hmm, this seems interesting.” I also always found myself gravitating towards medical science and I was always interested in shows like ER.
It just kind of became my passion from there, to be a Certified Registered Nurse Anesthetist. Now, with more than 10 years of experience, I’m starting classes this fall to fulfill my dream.”
Carter BloodCare understands the importance of diversity in the blood supply. In this case, it helps sickle cell patients receive the specific blood they need. What’s your message to people who haven’t considered blood donation yet?
KB: “If you’re able, it’s a priority to help your own community. It may not be you today, but it could be you tomorrow. Whether it’s giving blood or holding a hand, helping each other should be a priority.”