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.
Bloodworks in the Community – Bloodworks Northwest BlogBloodworks Northwest Blog
Blood connects all of us as human beings. Bloodworks’ lifesaving mission allows us to connect and celebrate with members of the communities we serve around the year, 24/7/365.
However, the summer months give us an opportunity to not only share our mission but to recognize, commemorate, and honor others as we observe certain events that bring us together.
In June, we celebrated two important events: Juneteenth and Pride.
Iesha James and Rozi Romanesco spread awareness of Bloodworks Cord Blood Program at two Juneteenth events in Seattle.
70% of patients in need of a stem cell transplant will not find a donor within their family. Those patients will need to hope that there is an unrelated match within the international stem cell registry. Because genetics are tied to family ancestry, you’re more likely to find a match within your own ethnic background. Unfortunately, Black and African American patients have a lower chance of finding an unrelated match than individuals of other races.
Cord blood dramatically increases the potential for a match compared to adult bone marrow because the cells in the umbilical cord are more adaptable. This is one reason why it’s so important to have more Black and African American cord blood donors.
Iesha shares more on why you should consider donating your baby’s cord blood.
While Bloodworks serves everyone in our community in need of a lifesaving blood transfusion, it’s an unfortunate reality that many gay and bisexual men cannot donate blood due to FDA restrictions.
Bloodworks has been an active supporter of changing the MSM deferral for over a decade.
We participated in Seattle PrideFest to thank our LGBTQIA+ donors and to educate the community on other inclusive ways to get involved through donation for research, volunteer opportunities, and current job openings.
Want to do more? Local ad agency (and Bloodworks partner) Green Rubino put together a campaign to end donation discrimination.
Bloodworks staff in their own words
We were so pleased to return to PrideFest, and join for both days this year. The energy is always inspiring. Bloodworks is proud to stand with its LGBTQIA+ employees and support the broader Seattle community. Sharing our resources on cord blood and other donation opportunities is vital to our work, and it was a fantastic weekend meeting current and potential donors.
We talked to many people about community blood donation, and reminded quite a few to donate again! We also explained to many inquisitive visitors that folks ineligible for the community blood supply may be able to donate for research. Marci and Jesse from HR stopped by to deliver handouts about open positions, so we also shared info about promising new careers at Bloodworks. Of course, I shared the wonders that cord blood donation can do for patients suffering from leukemia, lymphoma, and sickle cell disease.
I really enjoyed being at Pride Fest this year and was very touched to see all the people who had interest in helping give back in some way – whether it be donations, volunteering or applying to work with us, it felt more like it should be called ‘Love Fest’ to me for that reason. Everyone there was so happy and so accepting of one another and it’s just great to be somewhere that everyone feels they can truly be themselves and not be judged, even if it is just for two days a year, it gives me hope for the future.
On a different note, I was a bit saddened by the fact that even in this day-in-age and with all the technology that we have for testing blood, etc., the FDA still states that homosexual men cannot donate blood unless they have abstained for 3 months. To me this is a little bit archaic and I wish it would change. One man came up and said he was saddened by this because he was in a bad car accident in HS and needed many pints of blood throughout his recovery and wishes that he was able to give back in some way all these years later but cannot because he is a gay man… it hurt to hear and I hope that it changes. Other than that, it was an amazing experience and I encourage everyone to go at least once in their lives! It was awesome to be there representing BWNW as well!
First off I want to say that that the people who joined us to represent Bloodworks truly represent our mission. They were so excited to tell everyone about the various options to help the community through blood donation and awareness. We had a lot of folks come up to tell us that they appreciate what we do, which meant so much. Many people who came up to our booth did not know that donating blood for research or creating awareness about our cord blood program can be hugely impactful in saving lives. We had a great chance to also create awareness about the initiatives to change the policies for blood donation to a more science based approach, which I think was appreciated.
Last weekend being my first time attending this event, I was thankful for the acceptance our community has for its people, and had a wonderful time despite the uncharacteristically hot weather!
A Father’s Day Gift Like No Other — Stanford Blood Center
We hope everyone had a very happy Father’s Day! It’s one of life’s joys to be able to spend quality time with your family on special occasions. Our Marketing and Communications Specialist, Felicia Gonsalves, knows first-hand the impact blood donors have on patients’ lives. She shares her story of how her family came awfully close to losing that valuable time, and how it motivated her to pay it forward.
It was a day Felicia Gonsalves will never forget and one that changed her life forever. She had just returned to the Bay Area after a family trip to Lake Tahoe during the Fourth of July weekend in 2019.
That’s when she got a call no one wants to receive: her dad was in the emergency room. The doctors tested him for what they considered to be worst-case scenario — and it turned out to be just that. After significant strain on his heart, David Gonsalves’ aorta had dissected (torn). His diagnosis was so critical that he had to be life-flighted to UC Davis Medical Center in Sacramento. Felicia quickly drove up to UC Davis to be at her father’s side.
“It’s a struggle to watch it happen to a loved one. Panic set in, not knowing what was going to happen to him,” said Felicia. “The waiting was excruciating, and you feel helpless because you’re not able to do anything for him.”
Fortunately, her father survived, but it was a harrowing experience. “Honestly, it was a miracle! The doctors told us that most patients with a similar diagnosis don’t survive.” Felicia remembers seeing some of the life-flight crew that took her dad to the hospital come by to check on him a few days later after he was out of ICU. They were so happy to see her dad because they knew from experience that most people who go through this ordeal don’t make it. In fact, his recovery is so rare, that doctors at Barton Memorial Hospital in Lake Tahoe have asked to do a case study on David’s situation.
Once her dad was back on his feet, Felicia asked herself what could she possibly do to show her gratitude to all those on his care team who helped her father bounce back and regain his health. “A simple thank-you note wasn’t enough. I could write each and every one of them, but it wouldn’t be able to express how grateful I was for their compassion and kindness,” said Felicia.
That’s when she was finally able to muster up enough courage to donate blood. Despite working at SBC, Felicia was always scared to donate blood. In addition to having a fear of needles, she also had particularly tricky veins that made it more challenging to donate. But, after the experience her family went through, she was determined to overcome her fear and make a difference. “The best thank you I could possibly give was to give the gift of life,” she said.
It was also a way to honor her father who was an avid blood donor. David has worked for years at a local elementary school, where he made a habit of donating at mobile blood drives. Though his medical situation has made it impossible for him to donate currently, he still spreads the word about the need for donors and shares his story every chance he gets.
David Gonsalves was given a second chance. A chance to spend quality time with family and friends. And a chance to enjoy Father’s Day with his daughter. “It’s always front of mind this time of year,” said Felicia. “I got this time with my dad that others unfortunately don’t always get to experience. So, as a blood donor, the only way I could show thanks was to try to do the same for somebody else.”
Just after the two-year anniversary of her father’s recovery, Felicia’s grandfather, Ernesto became very sick. They found out that both of his kidneys and his liver were failing. At the hospital, he had been given several transfusions, but they learned that he didn’t have much time left. Over the next four months, he continued to receive blood products before passing away in February of 2022. Felicia and her family are so grateful for the extra time they had with Ernesto. The gift of time is something Felicia and her family want to continue giving to other families.
Felicia continues to advocate for the importance of blood donation. She has encouraged friends to donate, and some have taken her up on that offer. “Donating blood takes only about an hour, but can have such a large impact on someone else’s life. There’s no better way to thank someone for giving you more time; it’s priceless!”
Like Father, Like Daughter — Stanford Blood Center
Balaji Iyer recently made his 100th milestone blood donation at our Mountain View center — a moment he had hoped to share with someone very special. Unfortunately, illness delayed his 16-year-old daughter Satvika from making her very first donation that same day. But sometimes things have a funny way of working out. Satvika finally got a chance to donate blood last week, just as we get ready to celebrate Father’s Day! Their donation was a very special gift for this father/daughter duo, and a life-saving gift for someone’s parent or child in need.
Ross Coyle, Public Relations Officer, interviewed the two about making blood donation a family affair.
What led you to donate blood the first time?
I have been donating blood since I was 20 years old. I grew up in Mumbai, India and was part of a volunteer group that would provide blood donations for patients in a hospital blood center. I thought of blood donation as one of the easiest ways to contribute positively to society. There was an element of sacrifice (time and logistics) involved that made the contribution worth the effort. I also liked the fact that it was a random act of kindness: I was blind to who got the donation, absolving myself from judgment of whether the recipient deserved that kindness. The truth is we all deserve kindness without judgment and that is enshrined in this act.
Is there a motivation behind becoming a blood donor?
I have benefited enormously from all that society has to offer. I have been blessed with a great education, financial freedoms, good health and the things that money cannot buy. I am grateful to my country and the community that I live in. Blood donation is one way of doing good and giving back a little. It definitely involves time and priority management. We all have busy lives, but it’s important to make time to do good. I have AB+ blood (meaning I can give universal plasma, aka “liquid gold,” which only about 4% of the U.S. population has) and know that when I donate, there are many lives that benefit.
Did you ever think you would reach your 100th Milestone donation?
Not really, I was not focused on a specific number. Since my parents lived in India and I had business that took me there (and India is an endemic malaria zone with a three-month donation deferral period now for travel), I had multiple years of deferrals throughout my years of donations with Stanford Blood Center. Once I got close to my 90th donation, I definitely wanted to celebrate the milestone of giving my 100th donation with my daughter, Satvika, as she became old enough to do her first.
Every milestone in life should be celebrated. It was an opportunity to realize that I was on the path of making a difference. Every journey is a collection of small steps in life. I also realize that there are many donors with 700+ lifetime donations, so there is also that “good competition!” The idea is to do the best that you can, in ways that you can. Be a force for good in life. I also openly talk about this milestone with friends and family. This could be misinterpreted as boisterous pride, but my objective is to spread awareness and encourage others to do what they can.
What does it mean to have your daughter making her very FIRST donation?
Yes, it is great to see my daughter choosing to commit to contribute positively to society. Satvika wants to lead organizing the next SBC blood donation drive at her high school. She is developing into a great leader there as president of the environmental society. Satvika also contributes with her data science skills to research remotely as an intern in a lab associated with studying the development of neurological diseases at St. Jude’s Children’s Hospital. All this while keeping her weighted GPA at 4.6 this past school year. I hope she continues to contribute to her community and society!
What have you told her about becoming a blood donor?
We have been blessed with a lot in life, do the best that you can! Choose to be a force for good. Focus on your health by investing time in regular exercise and good nutrition and hydration. You have a role to play in keeping your body fit for a donation. Do what you can, when you have the opportunity to; health is not something that you can take for granted and factors beyond your control can also affect you. Choose to give and your cup will be filled. Enjoy giving and contributing to your neighborhood and society. There is such a thing as good karma and we do live in a circular society, we may not often realize this but what we put into the universe comes right back to us.
Is it extra special for you as we approach Father’s Day?
I feel blessed and grateful that she is healthy and able to contribute. You can never take anything for granted. I am happy that she believes in the cause and to the extent that I have been an influence in helping her make that choice. I feel like I am doing my job. I remember her as a kindergartener, joining me on bike rides to SBC enthusiastically to snack on the cookies and POG. Glad that she can earn her own POG now!
Note: Interviewed just prior to donation
Are you excited about your very first blood donation with Stanford Blood Center?
Yes! I’m so excited for my first blood donation at the center, hopefully one of many more to come. I believe that if you have ample access to such an essential resource as blood, it is your responsibility to share with others.
How are you feeling as you’re about to donate? Excited? Nervous? A little of both?
I am so excited to donate. When I was younger, my dad and I would bike in tandem to his donation, and I think it’s a full-circle moment to go into my first donation in tandem. Honestly, the photos my dad sends me while donating recently make it seem comparable to a cozy movie night in — curled up in a blanket while watching a movie, sipping on bottomless POG juice and toting some cookies; the reward for an invaluable donation seems to arrive in waves, some in the form of instant gratification.
Has this been something you’ve been wanting to do for a while?
Along with the list, including filing as an organ donor and getting my drivers permit, this experience is something I have wanted to do as soon as I could. A lif- altering pint in my body seemingly lazing around as surplus when it could find its defining purpose in another stream undercuts the potential of that blood, and along with giving that blood purpose, it gives me fulfillment as well.
Do you think you will become a regular blood donor?
Oh, most definitely. Plasma, or liquid gold as my dad likes to call it, is sourced only through human donation (like other blood products), and is imperative for the treatment of genetic and contracted diseases alike. It’s a simple way to give back to my community, and I know I will make time for it regularly going forward.
I understand you want to be a blood donation advocate for your high school. Have you already begun taking steps to help spread the word with your classmates?
Yes! I actually contacted Stanford Blood Center and my school’s principal in order to organize a mobile blood drive. I also believe in sharing education, since as high schoolers we can be wary and almost dismissive of anything shrouded in mystery, and the process of blood donation could be a point of less of interest in high schoolers. I think knowing the inner workings and impact of blood donation will go a long way in producing lifelong donors. Don’t hold the cookies either!
You’re making your first donation right before Father’s Day. What does that mean to you?
Imitation is the sincerest form of flattery that mediocrity can pay to greatness, or in my case, a daughter can pay to their father. I think this is a testament to the impact my parents have had on my life so far, and, in general, the habits we see practiced by our parents are the ones we take to and emulate most easily. The fact my dad is a blood donor bodes well for his future commitment to our joint workouts, racquetball matches and Scrabble marathons: he’s not going to stop anytime soon!
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