Sickle Cell Warriors

About Us

SICKLE CELL WARRIOR LOGOSickle Cell Warriors, Inc. is a non-profit charitable organization dedicated to education, empowerment, 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 family.

WHO WE ARE

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, 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 18,500 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. 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: http://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! http://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 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 on sickle cell disease, provide funding to research, 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! One of our core missions is to unify the entire sickle cell community. We promote events of all other organizations on the website, 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: http://sicklecellwarriors.com/classes/”

7 Comments

  1. Marie
    Marie June 21, 11:22

    I would like for someone to contact me about some guide of starting a sickle group.

  2. sammy
    sammy June 24, 13:34

    good day ,who may I get to reach you.I have this brother of mine call Jacob who is sickle cell patient .I will like him to be part of you.if he can be he the advice and assistance he need in getting some of the drug he needed.hope to hear from you.thanks Samuel

  3. deekay
    deekay January 12, 09:59

    Can we create a WhatsApp group?

  4. OBED
    OBED April 20, 06:26

    Where can one get original Discovite in Lagos?

  5. TwreTwre
    TwreTwre June 11, 07:13

    We will like someone to contact us. We are trying to create and awaken sickle cell awareness in Ghana

  6. chris
    chris July 07, 05:03

    My only son has this disease snd the acute type. He is just 14yrs old. We like to enrol him

  7. Sickle Cell Warrior
    Sickle Cell Warrior Author July 14, 13:14

    @Emeka, if you are in the US, you can come to the Patient & Family Conference in Los Angeles July 28-31. website is http://www.sicklecellconvention.com If you are not in the US, please join the Facebook page: http://www.facebook.com/sicklecellwarriors

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