SCAY21 Winners

Congratulations to the 2021 SCAY Award Recipients

Sickle Cell Advocate of the Year

Congratulations to category runner ups:

Sickle Cell HCP Advocate of the Year

Congratulations to category runner ups:

Digital Sickle Cell Community Advocate of the Year

Congratulations to category runner ups:

Awards Recipient Prizes

SCAY 2021 Sponsor

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SCAY Award Recipient Profiles

2021 Sickle Cell Advocate of the Year

Biba Tinga

Montreal, Quebec, Canada

What motivates you and your work for sickle cell and/or the sickle cell community?

The Sickle Cell Cause has been neglected and so many lives were cut short because of the lack of bàsis knowledge and health inequalities. When I compare the care my son use to receive in Niger to the in Canada, I see many similarities in the fact that they are all band-aids options.

We need better care for all regardless of where you live. Nobody should go through the pain of SCD in 2021 when a vaccine for an unknown virus could be developed in a record time…

Send your congratulations!

What would you like to share with the community about winning a SCAY Award?

It is an honor to be nominated and to actually win. There are so many dedicated people who are fighting to better the lives of those living with with Sickle Cell which makes this so meaningful. Getting this news brought me back to the beginning of my journey in Niger when I got the news that my baby was diagnosed with Sickle Cell. Looking back I had no idea what choices I would have to make to advocate for my son – I just knew it had to be done.

To be recognized by the entire community is heartwarming. As I advocate for son and others with Sickle Cell, we face so much opposition that it is easy to doubt ourselves. I spend so much time fighting the health care system and policies that this helps to validate that the right choices were made and that I am not alone. I hope to be guided by my son, the patients and the caregivers to continue the fight.

Tell us about yourself.

Biba Tinga is the  President of the Sickle Cell Disease Association of Canada (SCDAC) and at an international level serves the Board  of Directors of the Global Alliance for Sickle Cell Disease Organizations (GASCDO) as the Treasurer and co-chair of the Membership  Committee.

Born and raised Niger, West Africa, she immigrated to Canada pursuing a lifelong dedication to improving conditions for people living with sickle cell disease and for their families. 

As a parent of a young adult  who was diagnosed with sickle cell disease from infancy, she had to learn to fight to keep him alive. She has a unique understanding of the needs of the people in this community. 

Over the years she has leveraged her personal and professional  experience to advocate  for new life saving drugs, impact policy changes and raise awareness on the quality of life issues and the risks associated with the lack of care and barriers for this vulnerable population on the national and international stage. 

Biba is a working mother of 4, a sickle cell warrior mom and a tireless advocate for the Black Community. She speaks five languages, loves to read and to travel the world.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Our journey is a testimony of Forging hope through uncertainty: we came a long way managing SCD from Niger to Canada, from a death sentence to living and striving.

Your second accomplishment (#2)

Under my leadership in SCDAC Canada united: we created a strong unified voice to better advocate for all, putting patients and families’ voice first. Collaborative projects initiated.

Your third accomplishment (#3)

Need for Blood Project

SCDAC in collaboration with SCFA, Carleton University and CBS are leading a project with the aim of increasing blood donation by Black young adults.

Check out more of my work below
What impact have you made in the lives of those living with sickle cell?

I would say that the most important impact I have made is to raise awareness, educate and support other families by sharing our Sickle Cell journey publicly. I was a young mom who had to educate myself with very limited resources to raise and keep my son alive. I wish I had a support group while I was dealing with the diagnosis. Today, I coach other mothers or caregivers through experience sharing and advice.

Telling your own story is also a powerful way to reclaim your life. I share our journey to inform, educate, inspire others and reclaim my life. I became an advocate not only for my son but for the 6000 Canadians living with Sickle Cell Disease.

1- I initiated the after work gathering for Young Adults with the Quebec provincial Group. After transitioning from Pediatric to Adult care, we tend to neglect services for adults.

2- When I became the President of SCDAC, my firsy goal was to unite all provincial groups under the national umbrella to create one strong unified voice for Sickle Cell Disease in Canada. I also put an emphasis on patients and families first. We now have a pancandian representation. Unity is key!

3- I implemented the first National Research Program in Canada. We give an annual 50 000 grant to support Canadian researchers for pain management related research projects.

Grant program was suspended due yo covid. But 2022 will start with a new 50000 Grant announcement.

4- Under my guidance and leadership and collaborative efforts with provincial groups and HCPs, we are on our way to create the First National Sickle Cell Disease Registry in Canada. We want to collect data needed to make evidence-based decisions and to ensure the severity of the disease and quality of medical care are more evenly matched.

2021 Sickle Cell Health Care Professional (HCP) Advocate of the Year

Sarah Masamba​

Mthatha, Eastern Cape, South Africa

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What motivates you and your work for sickle cell and/or the sickle cell community?

I am motivated by my personal journey with Sickle Cell disease. Since I was born with the disease, I have had many ups and downs. I want to help others manage and cope better that I did. Also, as a 5th year medical student, I am well-placed to break down the complexities of Sickle Cell Disease in the healthcare system. Finally, I simply love sharing knowledge, bringing awareness, and doing this via social media.

Send your congratulations!

What would you like to share with the community about winning a SCAY Award?

Words are not enough to describe how truly honored I am to receive this award. This is just the beginning and I cannot wait to see what the future holds.

Tell us about yourself.

My name is Sarah Masamba. I’m from the Democratic Republic of Congo, currently living in South Africa. I’m a 5th year medical student who’s very passionate about using social media to share knowledge. My father is my biggest inspiration because he is a hard worker and has always had faith in me and pushed me towards achieving my dreams.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1) I organised a successful blood drive with 29 donors, during the Covid-19 pandemic, which was the first-of-its-kind to raise awareness for Sickle Cell disease.

Your second accomplishment (#2) Creating an Instagram page providing information and awareness about Sickle Cell Disease.

Your third accomplishment (#3) Developing a blog to share my personal challenges and experiences living with Sickle Cell.

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What impact have you made in the lives of those living with sickle cell?

The impact that I made to the sickle cell community was opening up and sharing my story and everyday experiences of living with sickle cell; basically just being myself. I created a platform educating people about this condition from two viewpoints merged into one: a patient living with the disease and a medical student.

Check out more of my work below
2021 Digital Sickle Cell Community Advocate of the Year

Siliana Coelho​

London, UK

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If you could change something about the current landscape of sickle cell, what would it be?

I would like the sickle cell community to stand together more, make more noise, make impact. I wish people with sickle would be more confident and speak! Break out of society norms and taboo subjects and talk about our condition that majorly affects our black community.

Send your congratulations!

What would you like to share with the community about winning a SCAY Award?

Firstly I’d like to thank everyone who even nominated me! I’ve never been nominated or even won anything in my life. Secondly, I’d like to say I’m so thankful for the position people with sickle cell have granted me, I treat it with utmost respect. Thirdly, sickle cell matters.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Sickle cell has always been something that has impacted every aspect of my life, from school, family and holiday. I missed out on pretty much a lot, always felt outcasted because no one understood my condition or even why I looked the way I looked. When I was younger I made a promise to myself that when I’d grow up, I’d be the woman I am today. Advocating confidently for sickle cell.

  1. My online platform is only used to advocate sickle cell, raise awareness for blood donation and showing ways to still live with the condition & be happy.
  2. I empower women to feel sexy, beautiful and confident in their condition. I show that no matter what cards life dealt you, you can keep going. I show young generations to keep pushing because it does get better.
  3. With my advocacy, I’ve raised millions of views on social media platforms showing sickle cell in play. I uploaded an intimate moment where I am crying in a crisis and I didn’t feel discouraged, I feel strong and I knew the impact it would have on the community. I was contacted by news outlets, social media influencers and even was on BBC.
What advice do you have for individuals living with sickle cell disease?

I would advise them that although you may feel alone and like no one understands you? I’m right here and I completely understand. But you, me, us, we can get through this together. This condition does not define us and we are not submitted to it.

Sickle Cell Healthcare Professional (HCP) Advocate Finalists

CVIS, DAC, CHTVSP, CCFDVC, DBH

MSN, APRN, FNP-BC

Digital Sickle Cell Community Advocate

SCAY Award Recipient Profiles

Sickle Cell Advocate Profiles

André Harris, MSW

Houston, Texas, USA

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What motivates you and your work for sickle cell and/or the sickle cell community?

I am motivated by the fact that the work I do today can impact the life of a sickle cell patient tomorrow. Even if I do not reap the benefits in my lifetime, I do not want the generations after me to suffer like I and the generations before me had to.

Tell us about yourself.

André is currently pursuing a PhD in Social Work at the University of Houston’s Graduate College of Social Work. Mr. Harris is serving in his second term on the Rare Disease Legislative Advocates Advisory Committee and as President of the Association of Black Social Workers (NABSW) University of Houston chapter. André also serves on the Executive Board of the Sickle Cell Association of Houston and holds positions on several other advisory boards for sickle cell and rare disease stakeholders to include Forma Therapeutics, NHLBI, and HHS. He is a proud member of Phi Beta Sigma Fraternity, Inc. and was recently appointed as the National Sickle Cell Liaison Director, a position that allows him to strengthen the social action interests the fraternity has in supporting the sickle cell community. André is a native of Kalamazoo, Michigan and is inspired by his fellow sickle cell community.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Interning for a Texas State Representative and filing and passing legislation that directly impacts Sickle Cell patients in the State of Texas.

Your second accomplishment (#2)

Appointed as the National Sickle Cell Liaison for my fraternity, Phi Beta Sigma Fraternity, Inc.

Your third accomplishment (#3)

Becoming a National Sickle Cell Advocate endorsed by the Sickle Cell Disease Association of America, Inc.

Relevant links:
What impact have you made in the lives of those living with sickle cell?

I have been operating as a professional sickle cell advocate for the past 7 years. In this time, I have helped work on the legislation signed by President Trump in 2018, I have worked at the state level as an advocate in North Carolina to ensure legislation, and other initiatives had the patient’s best interest in mind, I have had the privilege of sitting of numerous pharmaceutical advisory boards to ensure that new drugs and therapies being developed were patient centered, I have been honored to sit on boards for government healthcare agencies to lend the patient perspective in policies and initiatives around sickle cell from a federal perspective. Lastly, I was also privileged to intern in the office of Texas State Representative Jarvis Johnson, a vocal sickle cell advocate in the Texas House of Representatives. We filed 3 bills directly addressing sickle cell, one passed the house with bipartisan support, but died in the senate, and one resolution passed with unanimously. These experiences were fulfilling and motivating. To be able to make a direct impact on the lives of sickle cell patients and the overall community is my life’s work!

Check out more of my work below

Sarah Kumwenda

South Africa

What motivates you and your work for sickle cell and/or the sickle cell community?

My pain. Sickle cell crisis is something l wouldn’t wish on anyone else and this pain motivates me.

Tell us about yourself.

My name is Sarah Charity Kumwenda I am a youth advocate, model, a data scientist and a sickle cell advocate. I am passionate about making a change in my community.

I was born in a family of six children of which the first three are sickle cell free and three of us had sickle cell.  Watching my mother sacrifice her jobs and her education after my father died in 1996.

She inspires me because she taught me how to believe in myself, raised us with so much confidence even though the world was trying to break us with the stigma that was attached to being anemic. She always told me "If you are tired, rest, keep going but never give up," and for that reason that is why l a strong sickle cell advocate, she believes in me, she instilled that confidence in me and she motivates me.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Mobilizing 325 people and being able to execute my idea of teaching them.

Your second accomplishment (#2)

Being nominated the second time as a Sickle Cell advocate, means someone somewhere appreciates the little we do.

Your third accomplishment (#3)

Motivating & inspiring fellow warriors and caregivers.

 

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What impact have you made in the lives of those living with sickle cell?

When l started talking about sickle cell on social media, a lot of people opened up to having sickle cell and mothers who were told that sickle cell kids do not reach the age of 18 were inspired and l gave them the hope that was much needed to them as caregivers.

After seeing how people reacted to my sickle cell awareness campaign, l thought it would be wise to take it on the ground, l was able to mobilize three hundred twenty five sickle cell patients in a day with the help of the nurse.

I co-organized to meet sickle cell patients and caregivers twice a month to share the knowledge l had and how sickle cell patients should be taken care of (awareness campaign). This campaign was successful and even though we still have a lot of work to do, I have had guardians tell me their patients have improved, and we were able to change some patients and caregivers’ mindset.

We also have a teenager whatsapp, this focuses on living a less depressed life as a warrior. In this platform warriors talk about their challenges, and find possible solutions to help them. Since we have made a lot of progress with the awareness campaign and a lot of people are open to help we plan to open an NGO that will help people living with sickle cell, provide health care support, which will be the first one in Malawi.

Shadiah Namugenyi

Kampala, Uganda

What motivates you and your work for sickle cell and/or the sickle cell community?

I am motivated by my and others’ passion for the cause and the desire to see warriors excel and live a pain free life.

Tell us about yourself.

I am Namugenyi Shadiah and I am 26 years old. I have a bachelor’s degree in library and information sciences. I am an outspoken sickle cell advocate volunteering as a national community coordinator at Raising Hope International Friends based in Kampala Uganda.

I have always been inspired by the nature of sickle cell advocacy, which challenges me to get involved in different communities to fight against sickle cell.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Spearheading sickle cell clinic establishment in Mukono community. The accessibility of services is now readily available for the warriors for the first time.

Your second accomplishment (#2)

Sickle cell awareness walk in Buyende – a community event that I will always cherish because over 600 people were screened and 200 warriors received monthly treatment.

Your third accomplishment (#3)

Training of the village health teams to participate in the awareness programs. I mobilized over 30 VHTs who were able to receive basic training on sickle cell awareness.

What impact have you made in the lives of those living with sickle cell?

In my tenure as a National Sickle Cell Coordinator at Raising Hope international friends, I have spearheaded a sickle cell awareness walk and the establishment of the sickle cell clinic at Mukono Rotary hospital.

The sickle cell awareness walk I spearheaded drew over 1,500 people who are hungry for information regarding sickle cell, of which 200 children living with sickle cell were given treatment for a month and 600 people were able to know their sickle cell statuses.

The launch of the sickle cell clinic in Mukono community provided accessibility of sickle cell treatment for the warriors, screening for the general public and psychosocial support.

 

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Sonya Williams

Matawan, New Jersey, USA

What motivates you and your work for sickle cell and/or the sickle cell community?

When I was in college, I volunteered and maintained a role as the Treasurer for NJ Sickle Cell Anemia organization. As it turned out, years later I had a child with Sickle Cell Anemia. I am driven to looked for avenues that I can take to make a difference in the lives of those that have Sickle Cell Anemia and their families. From visiting children in the hospital or setting up events with the local university social organizations, I feel that I can help make those with Sickle Cell Anemia maintain normalcy and help improve their quality of life.

Tell us about yourself.

I am a parent of a child who has Sickle Cell Anemia. My son, who is currently a freshman in college is my inspiration. He has endured dealing with his illness, recently losing his father to cancer and still able to maintain a high academic status.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

I have raised over $215,000 which is used to increase awareness for those with Sickle Cell Anemia.

Your second accomplishment (#2)

A positive spokesperson to increase community awareness with workshops performed at hospitals. Also advocated the importance of a 504 plan with examples to be used as a template.

Your third accomplishment (#3)

Ongoing interaction with educators, politicians and law enforcement to educate about SC news and how they can get involved to bring more awareness of Sickle Cell Anemia community.

Check out more of my work below
What impact have you made in the lives of those living with sickle cell?

Some of my accomplishments:

  1. I formed a Sickle Cell Anemia team for my son called ‘Jimmy Express’ under the realm of the Embrace Kids Foundation. We have averaged over $13,000 a year in fundraising since my son was 3 years old. This has averaged over $195,000 for children with Sickle Cell Anemia plus funds raised for other Sickle Cell Anemia organizations (totaling over $215,000 since inception).
  2. I have also worked with the NFL McCourty twin brothers who host the Heel to Heal Plus Tackle Sickle Cell 5K. This has formed a good relationship for my son and others. The McCourty Twins always reach out to my son and others on a weekly basis to provide support and to see how he is doing both physically and mentally in school.
  3. Came up with the idea to have a learning center at the hospital (Robert Wood University in New Brunswick, NJ). This program provides a part time teacher who will reach out to the Sickle Cell Anemia patients schools to gather assignments and sit with patients to work on assignments when they are physically/mentally able.
  4. I have reached out to friends, family, educators, politicians and those in the law enforcement arena on an ongoing basis to educate them about Sickle Cell Anemia news and how they can get involved to educate and bring more awareness of Sickle Cell Anemia.

These accomplishments have been humbling. It has not only enabled an ‘open door’ for my son but for others who I have made lasting friendships with. I have learned that there are a lot of people who are not familiar with Sickle Cell Anemia and need to be educated. I feel there is a cure on the horizon and if there are more ‘hands on deck’ it will bring us closer to eliminating this disease.

Teonna Woolford

Owings Mills, Maryland, USA

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What motivates you and your work for sickle cell and/or the sickle cell community?

I am motivated by this community! The sickle cell community has the most beautifully resilient and vibrant people. I am also motivated by the opportunity to effect change. There are so many gaps and disparities. I’ve always wanted to be a part of the solutions rather than settling with the problems.

Tell us about yourself.

Teonna Woolford was born and raised in Baltimore Maryland. She has always been talkative, friendly, and full of life. She has Sickle Cell Anemia SS and has faced numerous health complications as a result. A true fighter at heart, she has recovered from numerous complications including bilateral hip replacements, a failed bone marrow transplant, many pain crises, and several other complications. She has a zeal for effecting change throughout the Sickle Cell community and understands the realities of those impacted by the disease. While sickle cell has been a huge part of Teonna’s life, she does her best not to let sickle cell define who she is. Teonna has had opportunities to discuss sickle cell advocacy with world leaders including Former First Lady Michelle Obama and Congressman John Lewis. She has been blessed to sit at some incredible tables and contributed to publications and working committees with the American Society of Hematology and NHLBI. She is also the founder and CEO of a new nonprofit organization, The Sickle Cell Reproductive Health Education Directive.

 

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Publishing the first guidelines for Sickle Cell and Stem Cell Transplants with the American Society of Hematology

Your second accomplishment (#2)

Founding The Sickle Cell Reproductive Health Education Directive

Your third accomplishment (#3)

Securing funding or fertility preservation for sickle cell warriors

 

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What impact have you made in the lives of those living with sickle cell?

I have been raising awareness since I was in middle school. I went to a predominantly white school where they were unapologetic about the fact that they had never had a student with sickle cell. Teachers and administrators would make comments like: “It would be so much easier if you were getting treated for cancer because at least we would know when you were going to be absent”. I started doing educational talks at local churches and schools, also advocating for African American blood donors. My advocacy really took off when I started speaking out about the dark side of bone marrow transplants. Prior to, curative therapy panels were always with warriors who had been cured. Going through and rejecting a BMT, I wanted us to have honest conversations about risks and benefits so the community can make informed decisions. Recently, I co-founded the first and only sickle cell organization to focus solely on reproductive health which was inspired by my struggle with infertility post-transplant.

Sickle Cell HCP Advocate Profiles

Amber Gray, CVIS, DAC, CHTVSP, CCFDVC, DBH

Lake Elsinore, California, USA

What motivates you and your work for sickle cell and/or the sickle cell community?

My biggest motivation for my work with sickle cell has been my shared experiences with the sickle cell community, and communities with complex intersectionality, as well as compounded healthcare issues. As a Doctor of Behavioral Health, Healthcare Educator, Professional and Leadership Developer, and Nationally Credentialed Victim Advocate, I dedicate my time, energy, and resources to making sure providers are empowered with trauma-informed, evidence-based knowledge so that they are committed to delivering a higher quality of care.

Tell us about yourself.

I am from Southern California. I am a Doctor of Behavioral Health, who specializes in healthcare education, victim and patient advocacy, volunteerism, and research. My passion has always been to help victims and patients receive care services and resources. My passion for helping has expanded to ensuring that healthcare providers are aware of the types of traumas they can cause with their interactions with patient or victim populations. Trauma-Informing providers are at the heart of making sure that all people receive the highest care delivery, quality, and interventions in a primary care facility, or medical setting. I have been working with patients and victims in some capacity for over 26 years. The foundation of all that I do for individuals is advocacy and making sure that patients and victims of violence have their voices heard. To improve care, create a better healthcare experience, and to increase the quality of care delivery, an individual must be focused and dedicated to patient and victim populations. My biggest inspirations have been my mentors Dr. Sue Dahl-Popolizio, DBH, and Dr. David Clarke, MD. These individuals taught me to look at the entire experience of the individual. For a provider to have true patient-centered care, the provider must look at the patient’s biology, environment, and psychology. These factors all play a role in the patient’s overall health. This is why I do what I do, to make sure that the populations I care for receive the best care experience. Advocacy has been a rewarding experience for me, throughout the years.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

Teaching providers that patients with sickle cell are asking for help. They deserve great care quality and they deserve respect.

Your second accomplishment (#2)

Helping the public to understand why having sickle cell can be a traumatic experience when providers are not trauma-informed or appropriately trained.

Your third accomplishment (#3)

Surviving my own medical traumas with SCT, IDA, and thalassemia, to become a Doctor of Behavioral Health and help people, by educating providers about sickle cell and trauma.

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What impact have you made in the lives of those living with sickle cell?

"The impact that I have made in the lives of those living with sickle cell has been in informing the public about patients who have sickle cell. It is astonishing how similar sickle cell patients’ experiences are. As an individual who suffers from Iron Deficiency Anemia, Sickle Cell Trait, Thalassemia Intermedia, and Microcytosis, I know firsthand what patients have gone through. I use individual stories, as well as my own, to frame the narratives, so that people can see an actual human being, behind the story.

I am a Doctor of Behavioral Health, so while I can’t explain medically to the public how painful sickle cell can be, I can share my lived experiences with exertional sickling and chronic pain. More importantly, I talk about what it’s like to be in pain, fatigued, and ill… going to a medical office, and a provider rolls their eyes and asks, "What pain medication are you looking for?" The disrespect and mistreatment of the patients is a traumatic experience.

This is why Sickle Cell and Trauma is one of the courses I teach. Being in the hospital, but being at the hospital informed, is a world of difference. My proudest accomplishments have been helping providers to understand and change their behavior. I was working with a neurologist once, who stated that he believed that individuals with Sickle Cell Trait were just shopping around for pain meds because sickle cell trait is asymptomatic. I presented peer-reviewed articles, systematic reviews, news articles, and social media accounts, where individuals with Sickle Cell Trait complained of similar symptoms, conditions, and circumstances. After much-continued education, this provider informed me that they have changed the way that they work with sickle cell patients, especially those with sickle cell trait. 

I want people with sickle cell to always know that they are believed, they are strong, and they can live a full and pain free life.

Maya Bloomberg, MSN, APRN, FNP-BC

Miami, Florida, USA

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What motivates you and your work for sickle cell and/or the sickle cell community?

There is no greater racial and health disparity in medicine than what is seen in sickle cell. Sickle cell warriors are an amazing group of people who were born with a disorder that causes significant pain, complications and premature death. To complicate things further, there are HUGE disparities in the care patients receive, so I have been compelled to help use my voice and expertise to spread awareness, educate and advocate to help this wonderful community get the care and treatment that they so deserve!

Tell us about yourself.

I am a Family Nurse Practitioner specializing in hematology for the past 7+ years. I earned my bachelors and masters of science in nursing degrees from University of Miami (Go Canes!) I specialize in sickle cell and bleeding disorders, which shed light on the significant health and racial disparities that exist in modern medicine. This led me to create my social media page @theHemeNP (like hematology nurse practitioner 😉) devoted to providing reliable information to sickle cell patients so they can better advocate for their health, with hopes of bridging this disparity.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

Your first accomplishment (#1)

2021 Patient Excellence Service Award from SCD Foundation of Florida

Your second accomplishment (#2)

Award of Excellence in Nursing Research & Evidence Based Practice

Your third accomplishment (#3)

Developing my instagram page and growing to almost 2,000 followers in under a year!

What impact have you made in the lives of those living with sickle cell?

I care for 300+ sickle cell patients and do my best to prevent premature deaths and complications. I also use my expertise in all of my instagram posts to help educate patients on topics they may not have ever known to ultimately help them have more meaningful conversations with their providers and advocate for their health. There is more to sickle cell than pain and anemia and unfortunately there is a shortage of providers with expertise in sickle cell which contributes to the poor outcomes we see.

 

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Digital Sickle Cell Community Advocate Profiles

Darleni Guerrero

Boston, Massachusetts, USA

If you could change something about the current landscape of sickle cell, what would it be?

I would change how little the ER knows about SCD. I would change and show the difference between the fact that creating awareness is not to be treated differently but to be treated the same, just better understood.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.
  1. Creating as much awareness about sickle cell as possible wherever we go-Teaching others about sickle cell disease especially those who are around our children.
  2. The importance of inclusion for children with sickle cell disease- Teaching children with SCD that they can do anything any other kid can do. To not exclude children with SCD from certain activities, there is a way around everything. To teach other children around children with SCD what it is and why it’s so important to know about it.
  3. The importance for schools and school staff to know about sickle cell disease- Teaching schools and school staff about SCD can be life saving. This also helps them teach those around them in school as well. This helps to better understand a child dealing with SCD.
What advice do you have for individuals living with sickle cell disease?

You can do anything you put your mind to. Please don’t limit yourself. SCD is not meant to stop you unless you allow it to. Properly caring for yourself doesn’t mean you have to limit yourself. Know the difference and make sure to live and love this life with no regrets.

 

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Isaac Williams

Queens, New York, USA

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If you could change something about the current landscape of sickle cell, what would it be?

If I could change anything it would be expanding sickle cell awareness on a bigger scale. I find it more beneficial to everyone when an issue within a community is understood by all. It creates a common ground of Knowledge.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.
  1. First for me, I know it’s a given but I would want my community to know I am them. I represent them & I love them. My experiences having our disease is what formed me into the person I am & I want to be someone that people use as a reference when they talk about or think of when it comes to reaching goals despite all obstacles. 
  2. My work as a Community Health Worker is the proudest I’ve ever been especially this year because I can see first hand the progression of my patients who have sickle cell. From achieving their short term year goals to understanding the independence you need to have with taking your health into your own hands 
  3. I want my community to know im proud of us and there is nothing we can’t do
What advice do you have for individuals living with sickle cell disease?

You live to learn then You learn to live. We’re born with this so work to understand it as you grow up. On top of that, please extend yourself grace (it’s tough handling everything) what we were born with doesn’t define us, but what we do with ourselves in the face of it, does.

Check out more of my work below

Tolulope Afolabi​

Philadelphia, Pennsylvania, USA

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If you could change something about the current landscape of sickle cell, what would it be?

To allocate more resources and support for Sickle Cell like other diseases have. I would also change the curriculum for medical professionals so that they are more knowledgeable and empathetic when presented with Sickle Cell warriors at patients.

List your TOP THREE (3) sickle cell-related accomplishments you are most proud of.

From modeling to styling, to going to school, to being a nurse and an advocate, there’s literally so many things that I do and I never let Sickle Cell get in the way of them. For example, I had my second open heart surgery in two weeks, at first it began to lead me into depression, and then I remembered how much I’ve overcome. Like learning to walk again at 16 because I had my hips replaced. This reminded me that I would be just fine and further motivated me to live my life to the fullest. As a warrior that has had many obstacles and surgeries, I found therapy, a strong support system, and traveling to be a great source of freedom and peace while I battle with this disease. I started a nonprofit called iFightForSickleCell in order to help individuals become aware of their hemoglobin genotype and to one day open up sickle cell clinics so I can continue to spread awareness and education while helping other warriors.

What advice do you have for individuals living with sickle cell disease?

We often shy away from asking for help; however, living with Sickle Cell is a constant source/form of trauma. It’s a lot to take on by yourself. Take the time you need to heal from that trauma by learning your needs and being able to voice them.

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8th Annual SCAY Awards Sponsor: AllStripes

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