“For a long time, I found myself hiding in the shadows of the woman I’m becoming today. I was diagnosed at the tender age of 10, had no idea what Sickle Cell was and yet I would be changed forever. Like many of us warriors, I was told I wouldn’t make it to see this age or that age. And through my defeat of those milestones, a timid girl became a proud young woman.
One summer day, before deciding whether I wanted to start college, before being sure, before believing I could survive even a semester of college with this illness that seems to take a hold of your at the most inopportune times. I searched the internet for the keywords “Sickle Cell” and “Nurse” not believing that the two words could coexist outside the nurse-patient relationship, I discovered Miss Tosin. There she was, beautiful, and smiling and PROUD to have Sickle Cell Anemia. I had to speak to her, hopefully learn more about her life and how she had done what I was told I never could. She was a living breathing example of my dream. She was an inspiration for me when I was in a dark place. I discovered that there were so many of us at time when I felt alone in my battle with SC, there were SO many of us that were just like me. Who could relate to each other like only Warriors can. I was awe struck and inspired and I wanted to tell the world, that we aren’t alone, aren’t ashamed. That we aren’t “drug seekers”. That we were born with this, did not ask for this, and yet we embrace it. We fight every day to achieve some level of normality.
I wanted to hug each and every person I met through the SCW group who don’t have their families support, who are afraid no one will ever truly love them because of this illness. Those afraid to LIVE.
I want to take away the fear and the stigma attached to Sickle Cell. I want more Sickle Cell support groups and pain clinics. Psychological and spiritual support, more research and preventative measures taken. Greater awareness and advocacy outlets. Most importantly I want a better quality of life for all Warriors. I want them to know no matter where they are in the world, that they are NOT ALONE and that there is hope. That there is someone fighting for us when we can’t fight for ourselves. I want people to see the beauty, humility and raw appreciation for life that comes with this illness. How it has changed me for the better.
An advocate is someone who intercedes for those who voices I unheard. I would like the privilege to be the voice for the Warriors in hospital beds, who are too tired mentally and physically to fight. For the families of Warriors who have lost a loved one due to lack of care. We deserve more, our lives are worth more than neglect and sympathy without action. Because being a Warrior isn’t just about the shape of our blood cells, it’s about the passionate, fighting spirit God has bestowed upon us. Because being Warriors isn’t just what we have…it’s who we ARE.”