DAILY LIVING & MOBILITY

Being Bold & Speaking Up: Living with Sickle Cell

Rare Disease & Syndrome

Jewel Darbone

My Journey with Sickle Cell and Gullian Barre Syndrome

My name is Jew-EL Darbone and I'm 28 years old. I was born with Sickle Cell disease type ss. Sickle Cell is a genetic blood disorder that affects the way red blood cells carry oxygen throughout the body. I had my first blood transfusion at the age of two. I was in and out of the hospital with sickle cell crisis; extremly painful episodes requiring pain medication, fluids, and usually hospitalization. In July 2007, I went into the hospital because I had walking pneumonia. My fever shot to 108, both lungs collapsed and I was in ICU fighting for my life on a ventilator for 10 days. After being sent to a normal room, I found myself paralyzed from the neck down due to Gullian-Barre Syndrome, an autoimmune virus. It took two years for me to even get up and get into a wheelchair to leave the house.

Now, almost 10 years later, I'm still wheelchair bound, but that hasn't stopped my mission and purpose in life. I've 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. I am Founder/CFO along with my business partner & friend Shamonica Wiggins- we are the trailblazers of our community.

We empower all Sickle Cell warriors to be bold & speak up about Sickle Cell along with living a bold fulfilling life never allowing sickle cell, a wheelchair, wearing oxygen or anything else stop you from living your best life. We are beautiful despite the health hardships we go through. Our strength is undeniable and I will not stop bettering my Sickle Cell community in every way I can.

EMPOWER OTHERS!

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