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community advocates

Jewel Darbone

Community Advocate
Bold Lips for Sickle Cell
Winston-Salem, North Carolina, United States

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 has always been a strong voice for those with Sickle Cell, advocating for herself and others is her passion. She always has a hand in helping younger generation sickle cell warriors and will always continue to.

Now, almost 10 years later, she is still wheelchair bound, but that hasn’t stopped her mission and purpose in life. She has 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. She is the Founder/CFO along with her business partner & friend Shamonica Wiggins, Founder/CEO.