One of our early experiences with Sickle Cell patients was with a 19-year-old young man, doubled over in pain, and trying not to cry. He said, “Ms. Rebecca, we’ve got to do something about this. We people with sickle cell have got to come together and support each other. We’ve got to have a march, or a basketball benefit, or something! I don’t know anybody with Sickle Cell, but I know they’re out there. And that just ain’t right.”
After hearing this, Streetlight set out to build a community of Sickle Cell Warriors– a group of patients and volunteers who work hard to find unique ways to connect and support patients, educate the community, spread awareness, and let everyone living with Sickle Cell know that they are never alone.
We knew they were “out there.” In fact, several other teens with sickle cell disease were just down the hall from him, but because of confidentiality rules we could only assure him that he was not alone. The Sickle Cell Team goals are to help get them together outside the hospital in support groups, and raise awareness in the community so school teachers, employers, and family members become more sensitive and supportive. Keeping pace in school, holding down a job, and just living a normal life can seem almost impossible because of their frequent hospitalizations. Failure can seem like their constant companion.
Sickle Cell Awareness Month
Our Sickle Cell Team organizes several events in September to honor Sickle Cell Awareness Month in addition to participating in the Annual Sickle Cell Awareness 2K Walk.
Painting the 34th Street Wall, Sickle Cell Benefit Concert, presenting at University of Florida’s MAPS, Black Student Assembly, and Poetry Slams are examples of past events. Each year looks a little different, with our team reaching out to patients both in and outside of Shands for ideas and thoughts on bringing the strength of this community together.
Painting the 34th Wall
Each year, the Streetlight Sickle Cell Team paints the 34th Street Wall to celebrate Sickle Cell Awareness Month and raise awareness of sickle cell anemia in the Gainesville community. Under the direction of muralist Phillip Walker, we paint the wall with a chosen slogan for the year, past examples including “Sickle Strong” or “Sickle Cell Matters.” We do this to show our sickle cell community there is support and solidarity in their fight!
Sickle Cell Gift Packages
All throughout the month of September (and beyond), we pass out Sickle Cell Gift Packages to give our sickle cell warriors a little extra love. Contents have included Sickle Cell Team T-Shirts, water bottles, Sickle Cell Team stickers, wristbands with a slogan, candy, fruit snacks, a flyer with sickle cell resources, and the first ever Streetlight beanie!