The reason why I feel I should advocate for voices of sickle cell and myself. Growing up I was diagnosed with sickle cell. It was challenging for me because back in the day, the doctors didn't have a lot of knowledge what sickle cell was. From the support of my big family that was there for me. My mother eventually taught me how to be strong no matter what the situation is. I will stand up for my rights and people. Let's work together and stand. I have a voice that I'm not afraid to speak up. Change will come.
As mother of three children , with two of them diagnosed with sickle cell, I want to be a part of the change for the future of the Sickle Cell community. I do not want them to fear the healthcare system or unfair treatment. I want my children and all warriors to know that once they enter any medical facility, they will get the best care possible. I know that using my platform and resources provided will assist in creating the change needed.
My advocacy journey began at fourteen years old, after being deemed “dramatic” by a health professional who completely invalidated my feelings. Deeply rooted systemic issues of racism, sexism, and religious bias have plagued our healthcare system, especially concerning warriors who suffer from SCD and/or chronic pain. As a warrior, I advocate for SCD so other warriors can have equitable healthcare. Sickle cell is a disease of healthcare disparities, in terms of being under-researched, poorly understood by the public, and the lack of appropriate therapies. So let’s make a difference, go into the public to be part of the stakeholders who play a role in improving access to care for sickle cell warriors.
Why I advocate: I am a mother of three amazing boys, two of whom are sickle cell warriors. I advocate for an equitable future for all sickle cell warriors. In addition to being a caregiver, I am the Sickle Cell Director and Newborn Screening Coordinator for Northwest Ohio. “Sickle cell disease has had a significant impact on my personal and professional life, and as a result, I’ve been trying to make improvements in a number of different areas to enhance the quality of life for my children and patients.
I am 68 years old and was first diagnosed at 62 years old with SCD after experiencing my first “major” crisis. After my diagnosis, I discovered the many stereotypes surrounding SCD. I also quickly realized as an older warrior the medical profession has pretty much written us off, not expecting us to live past 50. My goal is to bring more awareness to the unique needs of warriors over 50 as well as exploring more fully the impact of our lifestyle choices on the disease expression.
I want to see us move forward. It is possible to live a long and healthy life free of systemic racism and other real problems that affect those living with SCD. We deserve to be healthy. We are many, and we have power. It is our responsibility to support and love one another through the change we want to see. A cure is around the corner, but only as we are active participants in demanding better. I advocate for a healthier us.
I advocate for sickle cell because equitable care should be provided to all. I advocate to change the bias and narrative toward people living with sickle cell from the inside out. As a patient, I believe that the tools for understanding change come from within the experiences I have lived.
Being a caregiver and sc warrior, I want to make sickle cell famous again and bring the impactful change we want to see.
I have always had the tenacity to do what is suitable and equitable for individuals. My mission as a passionate leader is to seek that a person gets the best possible treatment, diversity, and Equity in healthcare.
I advocate for Sickle Cell Anemia because growing up in Idaho I was told a lot of can'ts and I want to show fellow warriors what we can do! I have experienced what it is like to have inadequate healthcare and the trauma that causes to patients and families. I want to create a more compassionate and fair healthcare system that can meet the needs of the Sickle Cell Community.
I advocate because I believe that my voice matters, and that I’m able to guide, change, and positively impact the lives of those who are living with Sickle Cell Disease.
I advocate because as a physician with Sickle Cell disease, I know how to advocate for myself.
But you shouldn’t have to be a doctor to get good care. I want to make sure that transformative and quality care is available to every patient living with Sickle Cell disease.
Hello! I’m Yasmeen, a fellow Sickle Cell Warrior and Spiritual Advisor! I reside in Alabama and have been advocating for Sickle Cell for most of my life while also assisting people with spiritual guidance.
Why I advocate: As a Sickle Cell Warrior, to give others a sense of HOPE, so they don’t have to suffer in silence. As a school nurse, I advocate for children with chronic conditions to reach their full potential in self-care health management, bring awareness to others, and having knowledge to receive high-quality care to live. We have the responsibility to take care of our Mind, Body, and Spirit to have a healthier life.
I advocate so the next generation of sickle cells warriors will be better educated and more prepared. I want them to know they are not alone in this fight. My goal is to teach them how to learn their crisis triggers, maintain an active and healthy lifestyle, and know how to treat a crisis without heavy pain medications.
Why I advocate: My mom has told me since I was a child that I had the trait and to make sure anyone I choose to have a baby with didn’t have the trait. Growing up in Jamaica, my significant other didn’t have access to genetic testing, so he didn’t know he had the trait. We were told two weeks after our daughter was born that she had SCD and were completely devastated. I became an advocate for a lot of reasons but mostly because I know advocacy can change things. I am going to do my part to make sure my daughter has a voice in this fight.
Why I advocate: I wanted to become an ambassador for sickle cell because there's always more to learn about... And so that I could lead more in the sickle network, and community. And also trying to grow more in this community although I'm a sickle warrior, I always feel as though I need to learn more. I always hear other people knowing more than me and I always felt like I have advocated when I was younger but as sickle cell meds grow and other things I want to see what else I need to learn about... To help
Why I advocate: My name is Nneka Okeke and I am a Sickle Cell Warrior. I used to be ashamed to tell people that I have SCD but now I want to use my voice to help spread awareness, educate individuals, and improve healthcare outcomes. Sickle Cell is a part of me but it does not define who I am and I will continue to live my life each and every single day!
I advocate for SCD because this disease continues to be stigmatized, underfunded and misrepresented. Due to the lack of awareness and focus, as patients we experience too much pain literally and figuratively because our health systems continue to fail us.
I advocate for sickle cell disease in the state of Utah because most patients with SCD are treated unethically due to the stigma associated with the need for narcotics to treat chronic pain related to the disease. I advocate for sickle cell disease because I give voice to those who don’t know their rights as patients and family members of patients living with SCD.
Why I advocate: My name is Olivia Meremikwu and I am a Sickle Cell Disease survivor. I am 25 years of age born and raised in Newark, NJ. I am a warrior, a Nigerian native at heart. I currently reside in Atlanta, GA where I advocate for those dealing with Sickle Cell. Impacting, providing solutions, and giving the same love that was given to me is my goal. Together we can go far ♥️
I advocate so that people with sickle cell know that they are not alone in this battle and to raise awareness and bring attention to this invisible illness. I want to help make a change in the world, where people who live with sickle cell can get the best treatment and care in hospitals across the globe until that day comes when we have a universal cure!
I am a 49 yr old Sickle Cell Patient. I have spent the majority of my life battling this debilitating disease physically, mentally and spiritually. I have chosen to be an advocate because of the disparities sickle cell patients face in so many forms daily.
I choose to be an advocate today because of my own personal journey with sickle cell disease. I remember all the trials and tribulations I and my family went through. Because of that journey, I want to stand shoulder to shoulder with other advocates and other Warriors to be part of the change we want to see and to remind people they are not alone in this journey, we are Warriors.
I advocate for sickle cell disease because I want to improve the quality of life for people like me. Providing patients and their families with the tools and support needed to navigate this chronic illness is an important part of that process. I plan to use my platform to educate people about sickle cell while conducting research aimed at exploring the science behind the disease.
Why I Advocate: My name is Rebecca Seavers and for over 30 years I have been an avid advocate of Sickle Cell. In 2017 I became the President of the Sickle Cell Association of Kentuckiana, a non-profit organization dedicated to helping families and children. As a mother of three children born with sickle cell and two granddaughters, being an Ambassador of Sick Cells provides a viable platform for me to continue to raise awareness and find resources for families in need.
My advocacy started when my daughter was born with [SCD] type SS. I had to not only be her voice but to be knowledgeable of what was going on within the sickle cell community. From then on I have taken an active role in bringing awareness and support to combat this disease.
I advocate to break down silos of those living with sickle cell through community engagement [by] working with hospital systems, community leaders, local government stakeholders, and school systems to improve the individual lives we interact with. This work includes spreading awareness, eliminating misconceptions, creating IEP educational resources and improving quality health care, and amplifying matters that mean the most to our Upstate NY community by creating a positive change and removing barriers. “Our lives begin to end the day we become silent about things that matter.” - Rev Dr. Martin Luther King Jr.
Why I Advocate: I remain optimistic and grateful for life. I work towards my goals and hope to affect real change in the sickle cell community. I am focused on not just living with sickle cell but thriving with it
I advocate because more voices are needed for individuals battling the horrible, overlooked sickle cell disease. More awareness and education must be provided to the public at upper and lower levels, and I am here to make sure those things are put in place to ensure the sickle warriors get the proper treatments needed to help combat sickle cell disease.
I advocate to raise awareness and educate others about what is far too often an invisible disease. SCD is a chronic condition but it doesn’t mean that individuals living with the disease can not accomplish great things! Everyone, including SCD patients, deserves to be treated with respect and dignity when seeking medical care. I hope through my advocacy work to shine a light on medical disparities in care and bring about indelible change.
I advocate because as I learn, I want others to be aware of the what, where, when, and how they are granted opportunities they may feel opted them out. We are in this together and we have to educate one another.
I advocate as a means to increase sickle cell education and awareness, elevate the voices of the community and improve healthcare outcomes that lead to sustainable increases in quantity and quality of life
I advocate to redefine the standard & stereotype of what living with Sickle Cell SS can be. To be a voice of inspiration that SS didn’t happen TO US, it happened FOR US. My life purpose and greatest fulfillment has come in spite of sickle cell and I will fight so that others can receive adequate treatment and lead purpose-led lives they design and not default to.
I advocate for SCD because it's essential to educate the masses about sickle cell disease. It's also important to be an example to other sickle cell warriors. Life should not be defined by sickle cell or any chronic illness. Despite our disability, we ALL have the ABILITY to dare, dance, and dream through the pain.
I am a parent and caregiver to my son with sickle cell. I advocate for him and for myself because I also have sickle cell.
I advocate for Sickle Cell Disease because it has been neglected for too long--both nationally and globally. Health equity, particularly non-discrimination and equality, is a basic human right and I look forward to playing an active role in pushing SCD to the forefront of the American Public Health agenda.
I advocate for sickle cell because I am a Sickle Cell Warrior! I have lost loved ones from this disease which makes me fight even harder to let the world know about what Sickle Cell truly is. I was born with the disease and I have it, it does not have me! My goal is to MAKE SICKLE CELL POPULAR!!
I Advocate because a close friend passed away from complications of SCD. After he passed I wondered, "How do I keep his legacy alive?" His legacy deserves more than an ode to Sickle Cell. It deserves a better understanding of the disease, advocacy for SCD, and the people who live with it daily for their stories deserve to be told.
I advocate for SCD to continue my brother’s legacy. My brother at the age of 23 years old passed away from the disease. My mission is to research and educate others on how to help a person who is born with HB SS. We are warriors who are on a journey to improve the quality of life for anyone who suffers from this disease. I am a Sickle Cell Warrior.
I advocate for my daughter, a Sickle Cell Warrior, that is full of love and light. I advocate for the voiceless and ensure their rights are protected. I advocate for justice and equity, giving all people a fair and respectful quality of life. I advocate to amplify the views of those that may not have the ability to share their story.
I advocate for SCD because of my son who was diagnosed at birth with the disease. I also want to help improve the quality of care for sickle cell warriors and break the stigma behind sickle cell.
I advocate for every warrior, present & future. Until we have our cure, know I can't stop and won't stop advocating.
Why I Advocate: Advocacy is more than support, It’s a lifestyle radiating change!
I advocate for sickle cell because it’s time to bring a voice to the voiceless. Many warriors do not have supportive families to help them fight this disease. Therefore, it’s vital that there are other support structures in place so warriors don’t fall through the cracks.
Why I Advocate: This illness is not me. It may be a part of my story, but it will never be strong enough to define me. Bringing awareness to sickle cell is so important to me because many Hispanics (Afro-Latino) like my parents don’t realize they carry the trait. I want to help educate the Latin community on this disease and bring some sort of hope to the younger sickle cell warriors that are in similar situations.
Why I Advocate: To give information on Sickle Cell Disease and share knowledge to obtain and give support.
Why I Advocate: I like to give back to the children and youth, to ensure they have a good opportunity, to make sure they have the best quality care, and the best education about sickle cell, and transition.
I advocate for the warriors that feel as if no one cares. Nothing’s worse than being vulnerable, in dire need of medical attention and being shunted aside. I have experienced this in more ways than one, and it motivates me to keep fighting for Sickle Cell patients so we won’t be forgotten within our medical system.