If you saw Ediomi Utuk walking down the street, you would probably be able to tell that she has a great sense of style, but it’s unlikely that you’d guess she is living with the painful disease of sickle cell anemia.

Sickle cell disease is a genetic condition that predominately affects African-Americans. The disease can manifest with excruciatingly painful episodes called crisis, in which the sickle-shaped red blood cells get entangled and block regular blood flow, causing agonizing pain, organ damage and infection throughout the body. It takes an incredible amount of patience and courage to live with the debilitating disease.

Not only has Utuk been able to live with the disease, she has also become an advocate for people with it, spreading awareness and breaking barriers and stereotypes along the way. She has firsthand experience and has researched the disease in-depth to better inform herself so she can educate others.

Her activism blossomed around the time of her 24th birthday, when she decided to throw a big party and collect the donations to help fund sickle cell research. In the process, she realized that not many people were informed about the disease.

“Not many people were talking about it because if they have it, they are in a way ashamed about it, don’t necessarily understand it or feel alone because of their experiences,” she said. From then on, she decided to become an advocate, striving to bring people together in innovative ways so they could learn more about the disease.

Utuk has successfully hosted several events and raised money for research while maintaining a modeling and photography career.

She has also overcome boundaries in the modeling industry with her unique hairstyle, dreadlocks. She recalled that when she first started modeling, she was told to cut out her locks but, wanting to stay true to herself, she did not. Now, just a few years later, she has been featured in Hype Hair magazine multiple times, an editorial spread in Munalunchi Bride magazine and the cover story for i.d.e.a.l. magazine and is booking jobs now because designers want her for her unique look and beautiful hair.

Even with so much going on, she continues to stay active with her advocacy work, raising awareness.

The latest project she is involved in is a documentary called “The 11th Chromosome,” which follows her on her journey to launch a nonprofit organization for sickle cell anemia in the New York City tristate area. The documentary is directed and produced by Katrina Rowson, a Rutgers University graduate who hopes to address the stigmas around the disease. She named it “The 11th Chromosome” because of the genetic location of the disease.

Utuk credits her ability to persevere through all of her challenges and succeed in life because of her “close-knit family that has helped mold [her] into a very happy and strong person.” She is one of four siblings; the eldest also has the disease, another is a carrier for the trait and a third has neither. The disease has affected everyone in her family through near-death crisis episodes, general physical limitations and trauma by association, having to watch someone they love suffer so greatly.

For years, Utuk said she asked God why she was given such a difficult disease, but in later years she realized that it was her calling. “I have been able to turn my struggle into something beautiful that can help others and lessen their own burden. God just saw fit that this is the way it should be,” she said.

Her goal and motto, she said, is to strive to keep “operating in my purpose on purpose.”