September is Sickle Cell Awareness Month, and people living with the disorder are speaking out to educate and fight the stigma of the disease. Sickle Cell Disease is a blood disorder and its symptoms can be felt throughout the body.
"The red blood cell is not in a round shape," President of the Sickle Cell Disease Association of America Beverley Francis-Gibson said. "It's actually in the shape of a sickle that causes anemia and the inability for blood to travel throughout the body."
Sickle Cell affects everyone differently; Mapillar Dahn has three daughters living with the disease.
"In the case of my oldest daughter," Mapillar Dahn said. "She suffers from excruciating pain, that we call pain crises, and she's actually described it as someone taking a hammer to her bones and just repeatedly striking her bones."
Sickle Cell disease can also lead to extreme fatigue, organ failure and symptoms could be life threatening.
"In the case of my other daughter," Dahn said. "She had a stroke at seven, and nobody really thinks about children having strokes, but the sickle cell community deals with it very commonly."
One of the hardest things to deal with is the stigma, her daughter recently spent a week in the hospital… and went back to school to answer impossible questions.
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"The person said oh I thought you were dead," Dahn said. "And then followed that with how does it feel to know you're not going to live to be a certain age. Could you imagine someone asking you that."
She joined the Sickle Cell Speaks Campaign to help empower her daughters and educate others about the hurtful stigma.
"That causes them to feel a sense of hopelessness," Frances-Gibson said. "And our goal really is to dispel that and let them know there are people fighting on the front lines for them every single day."
You can find stories from patients and tools on living with the disease at sicklecellspeaks.com.
