About us

Sickle Cell Warriors, Inc. is a non-profit charitable organization dedicated to elevating education, empowerment, advocacy, and awareness about sickle cell disease. Our mission is to inspire those affected by sickle cell. As of this minute, you are no longer alone. You have us—and we have you. Welcome to the Warrior family.

WHO WE ARE

The term “sickle cell Warrior” was first used online by our founder, Ms. Tosin Ola in 2005. Since then, it has been adopted globally by patients, families, and caregivers. Sickle cell warriors are people affected by sickle cell disease. One can be a Warrior (patient), parent, caregiver, sibling, family member, friend, relative. Nurses, doctors, researchers, scientists, and all health care workers who care for sickle cell patients are also Warriors. Warriors are those on the front lines actively fighting SCD in one way or another.

Sickle Cell Warriors are powerful people with an indomitable spirit. We are often in a constant fight on a daily basis to keep our head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings. At Sickle Cell Warriors, Inc., we are a team, community, and family. We are forever linked and joined through the coded sequence of our DNA. We are here to support you, to lift you up when you are down, to give you advice, to laugh with you, cry with you, hug you, love you, and pray for you. We are here for you 24/7, in the highest of highs, and lowest of lows. We are 24, 500 strong (and growing everyday) from all corners of the world, in every situation. The group is comprised of parents, children, teens, husbands, artists, healthcare workers, researchers, wives, professionals, advocates, activists, and students. We have members from every tropical region, several Islamic countries, South American, Europe, Africa countries, Indian and Asian populations. You will find someone to connect with—I guarantee it. So reach out and be part of this family. This is a ‘judgment and criticism free zone’. You can truly let your guards down and be 100% authentic. Drop us a line, even if it’s 2 AM, there is always someone here, probably another night owl just like you ;). Please read the community guidelines HERE.

WHAT WE DO

Sickle Cell Warriors, Inc. is dedicated to providing resources, information, education, research, and support to the sickle cell community. We do so through digital media. Our mission statement can be summarized into four main pillars.

EDUCATION: At Sickle Cell Warriors, learn about the real face of the disease. Educate yourself first so you can educate others. You are a whole person and SCD is a complicated condition. There are so many facets to sickle cell disease management, many aspects that go beyond the medical side that your physician can explain. The website exists as a portal of information dissemination. There is a huge library of articles that is bound to answer some of your questions. Complications…your period…diet…money matters…the workplace dynamics. Why can’t you sleep at night? Why do you sometimes have memory loss? What’s with the itching? What about the psycho-social aspects? How do you date? Should you get pregnant? What’s the deal with alcohol? Can you get a tattoo? What alternative remedies help with sickle cell? What symptoms and complications should you be on alert for? We’ve talked about relationships, work, sex, exercising, swimming, flying, fear of overdosing, hallucinations…the grittier parts of life that every sickle cell warrior goes through but no one wants to share. These are some of the myriad questions that we have all had, that we all can relate to. Your parents feel your pain, but they do not walk in your shoes. Your friends ‘understand’, but they are not in your body experiencing the fatigue, pain, and loneliness. Only someone that is going through the exact same thing can relate. We get it. We all truly get you—because we are or have been right there too! So ask whatever questions are on your mind, jump into any discussion and share your experiences. We need your input and your voice!

EMPOWERMENT: The sickle part of you may be weak, but you my dear, are a strong warrior! The oldest person in the USA with sickle cell is turning 87 this year. Each day is a testimony of your courage and strength. Your goals, dreams, and aspirations should not be left by the wayside because you have sickle cell. You just have to come up with a creative way to accomplish your dreams. You need to be patient, work hard at it, and take it slow. Even if you get knocked back with a crisis or pain, know that tomorrow is coming, and you will get up again and fight. Never, ever, ever give up your dreams and goals. The website features interviews from hundreds of sickle cell warriors living life to the fullest potential. Check it out at: https://sicklecellwarriors.com/category/wins/ Some of the goals that our warriors have set and accomplished include going skydiving, travelling across the world, flying on a plane, serving in the military, having a career, becoming a medical doctor, publishing a book, falling in love, graduating college, moving out on your own, having babies, getting cured with a stem cell/bone marrow transplant. You are only limited by your imagination and the limits you place upon yourself. Plan, set, work and accomplish your goals too. Then share your story with us! https://sicklecellwarriors.com/become-a-warrior/

AWARENESS: Many of us lived our lives keeping sickle cell a big secret. If we don’t talk about sickle cell, how will the PUBLIC understand? Learn how to share your perspective and raise awareness about sickle cell in your personal life, relationships, friendships, community, workplace, school, and the world. Breaking the silence can be hard, but we have tons of tips and advice to get you talking! Use social media to the fullest extent and join one of our many learning memes and challenges. Check out tutorials and videos at http://YouTube.com/SickleCellWarrior and http://twitter.com/SCWarriorTweets. Other sickle cell warriors all over the world can relate to this, we are all fighting the same struggle and going through the same things. You are not alone. So speak up. Even if you just illuminate 1 person a week, your impact is made on the gross ignorance that exists worldwide about sickle cell disease.

RESEARCH: We support all research inquiries and initiatives that are focused directly on any aspect of sickle cell disease. We share this information with our members via social and digital media portals. Each inquiry must pass through a rigorous evaluation process and receive a high rating from our Research Advisory Board before it is posted on any of our networks. We provide access for researchers to connect directly with patients and families who are interested in research participation, educate others about current research, serve as a pre-screening entity for clinical trials, and disseminate research findings to our networks.

ADVOCACY & ACTIVISM: Do you want to be more involved in the greater sickle cell community? Do you have plans to meet other activists, raise funds, become an advocate, organize an event for sickle cell, write a book, or start your own group? Well then this is a great place to get started. Join hundreds of active sickle cell advocates who are passionate about raising awareness about sickle cell. Network with other groups and organizations, and get motivated and encouraged to make something happen! We partner, collaborate, and promote events of all other organizations on our sites, publish numerous articles and videos with tips for advocacy, and spearhead several advocacy events throughout the year. We also have a quarterly advocacy training class that is great way to jumpstart your activism. Learn more or sign up for the next class: https://sicklecellwarriors.com/classes/”

Kurt Hafferkamp

Leave a Comment





Categories