Welcome to SCW
An Organization Supporting People With Sickle Cell Disease
Sickle Cell Warriors 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
Sickel Cell Warriors
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 7,500 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 ;).
EDUCATION
Educate Yourself
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 at https://sicklecellwarriors.com/ 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.
Companionship
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
Empower Yourself
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.
Checkout Website Features
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
Raise 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.
Tutorials and Videos
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.
ADVOCACY & ACTIVISM
Get Involved
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!
Fun Events
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, spearhead several advocacy events throughout the year that are great ways to jumpstart your activism. Here is an article to get you started: https://sicklecellwarriors.com/2010/05/starting-a-sickle-cell-movement-in-your-hood/
ABOUT THE FOUNDER
My name is Tosin and in May of 2005, I was hospitalized, in pain, sad, and lonely. I searched for several hours online for a community like this one and at that time there was none. That same night, I started a blog, which grew into the website at https://sicklecellwarriors.com/, which grew into this vibrant Facebook community, which grew into the Sickle Cell Warriors movement. My life hasn't been easy with sickle cell, and yet, through all the adversities, God has ordered my footsteps and given me strength to overcome and live my life to the fullest potential.
I'm a registered nurse, have a wonderful family of my own, graduated with my Master's degree and holding down a full time job. My message is that sickle cell doesn't have to own you, you are not defined by your diagnosis and you can live a rich and fulfilling life with sickle cell. So welcome to the family! If you want to send me an email, you can email me directly at Tosin@sicklecellwarriors.com
Join the Warrior family. I can't wait to get to know you better. xxx ~Tosin aka SCW