Behind the Paint
East Point, Georgia (Senate District 39)
This story has a more personal feel. I met JewEl Darbone previously at an advocacy event in Washington, D.C. Little did I know that there was more to her story than her bold, bright lipstick.
(Story continues below after slideshow.)
JewEl became physically disabled in 2007 due to a side effect from a vaccination that stayed dormant in her body for several months. After taking the vaccine, she got sick with pneumonia, and pneumonia caused the side effects to become active in her body, stripping her entire nervous system. Doctors diagnosed JewEl with Guillain-Barré syndrome. Due to JewEl already having sickle cell anemia, a disease that also compromises the immune system, she was never able to fully recover from the stripping of her nervous system. She never gained nerve control in her lower body ever again.
A strong sickle cell advocate and now a new member of the rare disease community, JewEl fights hard on issues pertaining to physical and medical accessibility.
During the 2018 US congressional session, her team of advocates helped pass the law S.2465- which helps sickle cell patients by supporting research through grants and other means.
JewEl says living life with two rare diseases has been anything but easy, but she says finding a sense of community makes the fight all worth it. Attending events like a sickle cell camp opened her eyes to how the sickle cell trait has affected her family and how sickle cell affects people in so many different ways.
Growing up was tough because she was isolated a lot. “I didn’t really find friendship until my 20s. I worked hard to not look like I was sick.”
JewEl says every day with sickle cell is Different. She says, “Sometimes living with sickle cell is like a jealous ex-lover that never wants to see you happy.”
Writer: Rasheera Dopson, Photographer: Lynsey Weatherspoon