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.”
You can play an important part in giving life to patients that rely on dedicated blood donors. Please make your appointment to donate blood this month by calling or texting 800- 366-2834 or schedule online.
Do you have a story about how blood donation impacts your life as a donor or a patient? Carter BloodCare believes stories are powerful ways to encourage blood donation and we would love to hear yours. Please tell us your story.
Meet the Investigators (S2 E20) – Bloodworks Northwest Blog
We find investigators in a lot of places, mainly in movie and television crime dramas. But there is a group of dedicated investigators at the Bloodworks Research Institute in Seattle that looks into cases of life and death every day. In this edition of Bloodworks 101, host John Yeager introduces us to that group; Dr. Jose Lopez, Sumi Paranjape, Dr. Moritz Stolla, Dr. Jing-Fei Dong and Dr. Jill Johnsen. In this episode entitled, “Meet the Investigators,” you’ll learn that what drives them is a deep and abiding desire to save lives. Full transcript below.
Sumi: The research institute has been a best kept secret. I think that we have a lot of potential for advancing and expanding what we do and I’m just, I’m incredibly excited about that.
John: I’m John Yeager and this is “Bloodworks 101.” Every good story has a beginning, a middle, and an end. Every good mystery has a twist and some suspense. Your protagonist is a good guy looking for clues, Sherlock Holmes, Indiana Jones, Philip Marlowe, Sam Spade, the detectives on CSI, Columbo, Miss Marple. All of these investigators have one thing in common, they don’t stop until they solve the case. They keep looking for clues, but, you know, investigators aren’t just private eyes that we romanticize in the movies. You find them all over, all sorts of places like the Bloodworks Research Institute in Seattle. In fact for the next few minutes, you’ll meet five of them, Jose Lopez, Sumi Paranjape, Moritz Stolla, Jing-Fei Dong, and Jill Johnsen, all world class investigators on a mission to save lives. So we’re calling this episode, “Meet The Investigators.”
Jose: I’m Jose Lopez. I’m the chief science officer at Bloodworks Northwest.
John: By all accounts, a world class investigator who comes from a most unassuming place.
Jose: I come from a little village high in the mountains of Northern New Mexico actually about 8,000 feet high. It’s a little farming village. I grew up on a farm and ranch. We had cattle and subsistence farming. I went to school there until college. I went to college also in New Mexico before going to medical school there and coming up to Seattle for residency and fellowship. So at the moment, we’re working on a three-year plan to build the research institute. So I’m working with other members of leadership to develop a plan for growing in a sustainable way and also starting to recruit other investigators.
John: In that little town in the hills of New Mexico, Jose Lopez was nurtured by a natural curiosity and a stream that ran through his backyard.
Jose: I was basically always outside. So when I was in high school, I did not have good grades because I couldn’t stay in to do homework. I just couldn’t stay inside. And, yeah, there was a stream and it’s high enough up there that there are a lot of trout. And we had built a little swimming pool in that stream in the back, and that pool attracted lots of trout. They are really wary trout, but I used to go and walk in the field near the stream and collect grasshoppers, and then I would toss them into the stream, upstream of the…and let them float in, and just watch what kind of patterns of the water would take the grass-…where it would take the grasshopper and how the fish would react to it. And it basically taught me really a lot about their biology because I could actually do little experiments. What if I throw it here, what if I throw it there, what are they like. So I became really good at fly fishing just because of those little experiments. Yeah, so that’s how basically I’ve learned about nature. And sometimes I say that, you know, one of the goals of our research is to kind of put ourselves out of business to understand blood to the point that we don’t need to use as much of it. But, you know, I think that, you know, in the end we’re all trying to do something to make the lives of people better.
Sumi: I’m Sumi Paranjape. I’m the chief operating officer of the Bloodworks Northwest Research Institute. Yes, so we are…you know, the Bloodworks Research Institute is unique for many reasons. We are unique because of our scientists, we are unique because of what they do, but we’re very unique because we sit in a blood center. And that blood center enables us to have those opportunities to connect the laboratory science directly to the patients, you know. And that is…that in the end is what’s going to keep us going and what’s going to continue to make us, you know, the best in the world and the best at what we do. At Bloodworks, we study blood and specifically, we study the mechanisms of blood flow and how we stop blood flow which is called hemostasis, and we study the mechanisms of clotting or thrombosis. Our scientists also perform translational clinical research into bleeding disorders. This includes bleeding disorders such as sickle cell anemia and rare bleeding disorders. We’re also proud to work, we’re developing novel treatments for bleeding disorders specifically in women and girls. And finally, we have a very well established clinical program that develops and evaluates platelet and red blood cell function, and storage.
John: Can you accurately describe this place as a best kept secret and why shouldn’t it be?
Sumi: It is definitely a best kept secret. There is so much research going on at Bloodworks Research Institute that is just fundamental to new cures and fundamental to our understanding of disease. One example I’ll use is the recent complications that we’ve seen with the Johnson & Johnson vaccine. That is caused by…basically what’s happening is clots are forming in these women who were having issues and this is one of the things that our scientists are studying. And so the knowledge that they have combined with other medical knowledge is so powerful and will lead to additional cures, additional diagnostics, and really opportunities for prolonged life.
John: Biggest challenge right now in front of you?
Sumi: You know, I think the challenge that we face at the research institute is very similar to the challenge that many research institutes face, which is how do we create opportunities to translate new scientific discoveries into, you know, tangible and enduring medical treatments. One of the reasons I took the job was because the research institute is doing and is poised to do more translational research. And what we mean by translational research is how do we take basic scientific discoveries and make sure that they…that those discoveries can become treatments, cures, and diagnostics to improve the lives of patients.
John: You’ve told me before that you’ve spent years of your life in a lab. Why?
Sumi: That very recent. So when I was a kid, I had really severe asthma. Sometimes I would spend months and months of a year in the hospital. Sometimes up to half a year was spent in the hospital. You know, and so as a child, those experiences are formative and I came to realize that, you know, for my life, in my life, I wanted to find a way to give back to science and medicine. And at the time, it was more of a binary decision. So you would either do research or you would do medicine, and some people did both. But I made a decision when I was probably 9 years old that I wanted to be a scientist so that I could help to discover cures.
John: Dr. Moritz Stolla is also an investigator who works at the research institute. He’s German, originally trained in internal medicine and cardiology. He’s become passionate about platelets.
Dr. Stolla: Transfusion medicine is a subspecialty of clinical pathology and so this is… And since I was investigating platelets, it all came…it all made sense basically.
John: What was it about transfusion medicine and platelets that attracted him so much?
Dr. Stolla: Yeah. It’s a good question. I think it’s just…I just think a fascination with biology and mechanisms, and ultimately from a physician scientist point of view, also the ability to help patients, right?
John: Stolla says, yes, he does look at himself as an investigator who works off an instinct, a hunch, and a career’s worth of experience.
Dr. Stolla: I think so, yes. I think that’s part of the scientific method, right? We have observed things, we have a hypothesis, and then you try to disprove the hypothesis. And then it comes what you just mentioned, you have to do it thoroughly, diligently. Honestly also, I mean, a lot of… Nobody likes the most favorite hypothesis to be disproven, right? But the data are the datas is another commonly used slogan, right, in research where we just have to deal with it, right? The facts are the facts. The data don’t lie, right? That’s just the way it is.
John: And if you ask him why platelet storage is so important, he’ll tell you, the answers are a matter of life and death in combat zones and remote civilian hospitals all over the world.
Dr. Stolla: Yeah, that’s a good point. So the major…I would say the major problem with platelets right now is they can only be stored for five to seven days.
John: So I mean, it sounds like we’re getting to the heart of your research right now. What you’re saying is that the ability to understand storage of platelets does have lifesaving consequence, right?
Dr. Stolla: Yes, that’s correct.
John: Dr. Jing-Fei Dong is another investigator at the research institute. His field of study, traumatic brain injury or TBI.
Dr. Dong: Trauma patients often bleed out…bleeding uncontrollably. In fact, 70% of trauma patients got killed because of bleeding, but these are not traditional hematology but rather hematological presentation in non-hematological disease. This is a fascinating area because number one, I know a lot more about TBI because of my clinical training. Number two, how a tiny injury to the brain… You know, if you got a liver injury or you have a long bone fracture, that massive area of injury, so you have shock and you have bleeding, all of that understandable. But in the brain, the injury, normally measured in millimeter or centimeters, not in meters or not… You know, talk about bleeding, liver rupture, you can lose up to liters of blood in about an hour or less, where in a brain injury, 200 or 100 milliliter of blood loss can kill you.
John: How close are we to giving hope to somebody who has a traumatic brain injury? Are we making strides that give the ordinary person hope?
Dr. Dong: Oh, yeah. There are huge amount improvement.
John: And then there’s Dr. Jill Johnsen, an investigator who’s one of the hematologists at the Washington Institute for Coagulation in the University of Washington.
Dr. Johnsen: And I care for patients with bleeding disorders, and I do research on the causes of why we have variation in how we clot our blood, and why do we have trouble with our blood groups and transfusion. So I work at the intersection between giving clinical care, and trying to better understand why people have disease, and putting the two together to make both sides better.
John: What’s a normal day like for Dr. Johnsen? That’s a tough question. There is no normal day. It just doesn’t happen.
Dr. Johnsen: Oh, gosh. I don’t really have a good answer for that one. I really don’t have any days that are the same. You know, some days I’m seeing patients in clinic, some days I’m taking call over the weekend. So lots of days where I’m talking to the people in the lab to help think about how to troubleshoot an assay or coordinate that everybody’s getting that precious sample to the right place, and sometimes I’m sitting in meetings with my collaborators brainstorming, you know, what are the big questions we should be answering. The biggest question is why is everyone so different? But I can’t tell why. Everyone is so different from each other. So we have people that have the same diagnosis, they might even have the exact same lab value, but they bleed differently than each other. And that’s a really important thing to understand, why does someone who looks exactly like their sibling have different bleeding? You know, it’s probably something related to the rest of their genetic makeup or maybe it’s something about other things that…in their environment, but we really don’t understand that. And if I’m gonna take better care of people on the clinical side, I wanna know who can have a lot of bleeding and who’s not. And if I’m gonna do better research, I mean, to better refine these questions, so I can better say like, “Here’s the person,” and articulate, “Here’s exactly what they’ve got with their disease.” So I can say, “Oh, well, there’s a lab test that clearly the labs are missing something.” Well, what is that something the labs are missing? I work with a fantastic team. Like, you know, science is not a solo sport. It is absolutely a team you’re surrounded with, and how clever people can be, and bringing people together with different skill sets. It’s definitely a fantastic place to work in interdisciplinary science. We’ve got to have a new approach, bring new tools, go back to the clinic and say, does this make sense, what we learned from the clinic, go back to the bench, you know, we’re still missing the boat, why do we keep missing the boat, where do we think our blind spots are, and just keep going. And there’s never gonna be one answer which is why it’s complicated, but also why it’s so cool, you know.
John: As any good investigator would say, there’s never going to be just one answer. It’s always gonna be complicated, but I loved how Dr. Johnsen wrapped it up there. She says, that’s why it’s so cool. Well, that just about wraps it up for this episode of “Bloodworks 101,” except there’s one thing I need to tell you about. On June 3rd, join us for an evening of science benefiting the Bloodworks Research Institute. Our investigators will take you on a virtual exploration of the power within a pint of blood. All proceeds from the event and auction will directly benefit the Bloodworks Research Institute, the innovative arm of Bloodworks, creating cures and advancement in medicine through lifesaving blood research. The Raise Your Pints event is free to attend. Upgrade your experience to include beer and/or a gelato tasting box delivered to your home in time for the virtual event. Last day to purchase beer and gelato is May 26th. Complimentary delivery is available in Seattle, Portland, and Eugene. If you live outside these areas, please contact us prior to completing your order to arrange shipment so it gets there in time. Email us at [email protected] Register now at raiseyourpints.givesmart.com. It’s gonna be a lot of fun. All right, that’s it for “Bloodworks 101.” I’m John Yeager. See you next time.
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