Trusted Resources: People & Places
Healthcare providers, researchers, and advocates
Jewel Darbone (Remembering)
Community Advocate Co-Founder
Bold Lips For Sickle Cell
Winston-Salem, North Carolina, United States
Jewel Darbone was a sickle cell motivational speaker and Co-Founder of BoldLipsForSickleCell (Now Bold Plus+). Jewel had her first blood transfusion at the age of two. She was in and out of the hospital with sickle cell crisis; extreme painful episodes requiring pain medication, fluids, and usually hospitalization. In July 2007, she went into the hospital because she had pneumonia, her fever shot to 108, both lungs collapsed and she was in ICU fighting for her life on a ventilator for 10 days.
After being sent to a normal room, she found herself paralyzed from the neck down due to Gullian-Barre syndrome, an autoimmune virus. It took two years for her to even get up and get into a wheelchair to leave the house. Since she has lived with this disease, various situations have been brought to her attention. She had always been a strong voice for those with Sickle Cell, advocating for herself and others was her passion.
She traveled across the US speaking about living with Sickle Cell as a patient advocate, empowering all Sickle Cell warriors with Boldlipsforsicklecell, which is a social media awareness challenge turned 501c3 nonprofit organization dedicated to Sickle Cell awareness, advocacy and empowerment.
Related Content
-
Sickle Cell and School: A Guide to School Policy and Best PracticesSickle cell disease (SCD) is a collectiv...
-
Jazz’ Journey With Sickle Cellhttps://www.youtube.com/watch?v=OMC5wOyD...
-
Sickle Cell Disease: Data Saves Lives“One minute I’d be fine, the next mi...
-
Today’s Faces of Sickle Cell Disease: Rodrick MurrayRodrick Murray was 3 months old when he ...
-
Andrea M. WilliamsAndrea Williams founded and leads the Ch...
-
SCDA-West Alabama Chapter – NorthportThe Sickle Cell Disease Association of W...
-
Sickle Cell Carriers’ Unmet Information Needs: Beyond Knowing Trait StatusBenefits of identifying sickle cell dise...