#foscs17

Siblings Kyle and Michelle both battle sickle beta thalassemia. Kyle, the oldest, loves to watch sports and interested in drafting. Michelle, the youngest, enjoys drawing, painting and ceramics. They are of Italian descent. #SickleCell101 #FacesOfSickleCell #sicklecell

“Having lived with sickle cell disease for over 74 years, my experiences have been broad. The plight of sickle cell patients will not get any better unless there is a greater understanding by others of what we endure. Initially I wrote “Living With Sickle Cell Disease: The Struggle to Survive” in hopes it would sufficiently educate others about this disease, yet when I continued to receive the same questions and comments about this disease, I realized that I needed to target a larger population. Thus, two additional books were created: “Living With Sickle Cell Disease: The Inside Story” and to accompany it, “The Inside Story Curriculum Development Guide” (for Teachers) These books are align with the Common Core Standards and can be purchased on amazon.com. I would challenge families impacted by this disease to purchase a copy of these books, read them, and then donate them to their local high school or library. This would be the perfect opportunity to discuss with the principal the value of educating their staff and students about this disease.” #SickleCell101 #FacesOfSickleCell #sicklecell

“On December 4th, 2008 our lives changed forever as we received the news that our beautiful baby girl had sickle cell. Our first reaction was, Sickle What? However, once the shock wore off, our goal has been to ensure that all newly diagnosed families can readily find easy answers. Our daughter breaks the mold of the face of sickle cell with her fair skin, blonde hair and blue eyes. She really brings home the concept that sickle cell is colorblind. It's a blood thing not a race thing.” - Lisa Rose, Mother & founder of @hopeforscd We are starting off September’s Sickle Cell Is Global - Faces of Sickle Cell Campaign with one of our favorite little sickle cell warriors, Sophia. She diminishes stereotypes regarding what an individual with sickle cell disease looks like. #SickleCell101 #sicklecellawareness #HopeforSCD

“My first show was in 2013, and what significant about this show was that I competed despite being in pain. It started during the week before the competition. When it hit I knew what it was right away. I was in full pain crisis mode. I remember thinking to myself, “Wow, all that work I put in for my first show, and now I may not make the show.” The day of the show comes around and I'm still having a pain crisis. I man up enough to block out the pain and I hit the stage. Three shows later I won my very first show in the masters division. The following year and won masters and two open classes.” - @james_godsson_allen #SickleCell101 #FacesOfSickleCell #sicklecell

“Being a sickle cell SS has always been a fight with physical pain and mental self. To overcome the daily struggles of life, work and sickle cell, I live by poem "Invictus" by William Ernest Henley. The poem's words, "I am the master of my fate, I am the captain of my soul" are the words I live by. Whenever I face difficulties those words get me through. Furthermore I always smile, in pain or not, as my father once told me a great quote "Smile and the world smiles with you, cry and you cry alone.” I like to motivate other sickle cell patients by setting an example. All the things I have achieved in life is to motivate my fellow sickle cell warriors. I want to say this to all my sickle cell warriors, "Don't get upset or demotivated. You are capable of achieving great things in life. Stay focused, stay hydrated. Sickle cell doesn't control you, you control sickle cell." #SickleCell101 #FacesOfSickleCell #sicklecell

Zalika had been in and out of the hospital all throughout her high school years. In 2010 she received her transplant and met her donor for the first time at the #BeTheMatch Minneapolis Tribute in 2012. To learn more about Bone Marrow Transplants for #sicklecell disease, or joining a registry follow Be The Match (@bethematch) and visit their website www.bethematch.com #SickleCell101 #FacesOfSickleCell #sicklecell

As a recent graduate obtaining her bachelor's in Business Administration with an emphasis in Marketing, Jazmine is huge advocate for sickle cell disease where she is determined to educate people on this illness. She noticed the lack of education, information, and research on sickle cell disease and therefore went on to become a patient advocate, and is currently a intern with the Sickle Cell Community Consortium. She advocates for sickle cell disease, through her YouTube channel, and her social media accounts. Jazmine create videos, content and manage multiple social media accounts in order to provide the education to other patients, caregivers, with hopes of continuing the education process. @beautywithinsicklecell #SickleCell101 #FacesOfSickleCell #sicklecell

“Being a mom living with sickle cell disease gives me the push I need to keep on fighting another day. I’ve developed a sense of self-preservation because of my little girl.” #SickleCell101 #FacesOfSickleCell #sicklecell