Hi Little Spoons! How is everyone doing in month uhhh (maybe six?!) of this pandemic? It doesn’t seem fair to call it “quarantine” anymore as this is beginning to feel more and more normal, and kind of just how life is now. We hope that everyone is doing as well as they can given the circumstances, and we want you to know that now, more than ever: you are not alone, and your community is here for you! To that end, September is Sickle Cell Awareness Month — and we wanted to make sure that we did our part and help give a voice to members of our community living with this invisible diagnosis (in addition to some others!).
In September, we spoke with Amanda DeJesus about heart-healthy cooking and her heart transplant; Sabrina Marie Vera about rare blood disorder Hereditary Hemorrhagic Telangiectasia (HHT); Revée Agyepong about reversing sickle cell disease with a stem cell transplant; Bukky Adeyokunnu and her brother brother, Ade Adeyokunnu, about sickle cell disease advocacy and community; and Charles Sanchez about AIDS activism and advocacy.
In addition to using these episodes as a resource on your invisible illness journey, be sure to also check out Hacking Healthcare: a Resource Guide. We partnered with Angels of Epilepsy to share some helpful tips and hints for navigating the healthcare system for yourself or for a loved one. Simply submit your email and download your free copy today!
Inspired by her need to eat heart-healthy after having a heart transplant at age 15, Amanda DeJesus developed a passion for cooking and trained as a chef, graduating from the Art Institute of Houston in Texas. With her friend and stroke survivor Kelly Fucheck, she is co-host of the podcast Unfiltered Survivors. In 2017, Amanda served as a spokeswoman for the American Heart Association’s Go Red for Women campaign; she continues to volunteer with the AHA, and is also affiliated with Donate Life America and Lyfebulb. As a chef, she continues to serve clients seeking heart-healthy alternatives to their favorite dishes, assisting patients who are undergoing lifestyle changes, and providing support and education…from shopping to cooking lessons.
Sabrina Marie Vera is a proud first-generation college graduate, Puerto Rican woman, and HHT survivor. She and her family suffer from Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic blood disease that took her brother Robert’s life 15 years ago. HHT affects about 1.4 million people worldwide and has no cure. Sabrina, along with her mother, is the co-founder of the social change initiative and online platform Living with HHT, which connects over 2,000 patients worldwide living with HHT from all over the world. Her goal is to be a lifelong advocate for people with rare and chronic diseases, both in and out of the courtroom (as a future lawyer!).
Revée Agyepong is a registered nurse specializing in neonatal intensive care and based in Edmonton, Alberta, Canada. She currently works in the Pediatric Hematology Clinic at the Stollery Children’s Hospital as the Sickle Cell Disease Nurse…which is fitting, considering that until recently, she was living with sickle cell disease herself. In late 2017, she received an allogeneic stem cell transplant to cure sickle cell anemia, thanks to her sister’s bone marrow donation. Revée is passionate about inspiring, encouraging, supporting, and advocating for the sickle cell community. Come along with her on this beautiful story of perseverance, determination, and faith.
Bukky Adeyokunnu is a self-taught portrait photographer and filmmaker. Born in Lagos, Nigeria and bred in Prince George’s County, Maryland, Bukky tells visual stories of women, health, and the immigrant experience. She began her journey in 2015 and has since become a Dean’s Collection artist; been featured in xoNecole for The Warrior Series, a photo series which captures how three strong women triumph over sickle cell disease; and been featured in local exhibitions including Washington D.C.’s Mayor Muriel Bowser Presents 202Creates – LOVE series. Bukky is based now in Northeast Washington, D.C. and is available for commissions and collaborations. As you will discover, she’s not alone in her sickle cell journey, either…her older brother, Ade, also lives with the diagnosis.
A native of Nigeria, Ade Adeyokunnu emigrated with his family as a child and grew up in Maryland. Currently living in the Philadelphia area, he’s been passionate about sickle cell disease advocacy for as long as he can remember — perhaps because both he and his younger sister, Bukky, both live with the diagnosis. It’s what drove him to create SikCell, the first online community for people living with sickle cell disease, in 2009. Ade firmly believes that building a support network of people who understand what you’re going through is crucial to long-term quality of life.
Charles Sanchez is a Mexican-American, gay, HIV+ writer, performer, director, and advocate living in New York City. He is one of the co-founders of Skipping Boyz Productions, and conceived, writes, and stars in the award-winning musical comedy web series Merce. In 2003, he was diagnosed with AIDS and began his journey to becoming an activist and advocate. He was included in Healthline.com‘s list of HIV Honors: The Most Influential Voices of 2017, and was honored in POZ Magazine‘s 2018 POZ 100, celebrating people over 50 making a difference in the fight against HIV and the stigma surrounding it. Sanchez has been a Contributing Editor for TheBody.com since 2017, and has had essays published on PositivelyAware.com, Them.us and HuffPost Queer Voices. In the spring of 2020, he began hosting a live interview show on Instagram for TheBody, called “At Home With”, featuring prominent members of the HIV and LGBTQ+ community.