In a small classroom on a part of campus frequented mostly by physics majors, there were about 15 students at a Gator NAACP meeting attentively waiting for the next person to speak.
There she was.
Hands clasped together in a pleading position, she donned a hopeful gaze and expressed compelling words, speaking as if addressing a crowd of hundreds.
It was yet another passionate speech from Fariza Alendy, a 21-year-old health education and behavior major from Miami, Fla., speaking about a disease long-ignored.
In the summer before her sophomore year, Alendy started volunteering with Streetlight at Shands, a program made up of mostly pre-med college students. It allows them to build relationships with young patients living with cystic fibrosis, sickle cell disease and illnesses and provide them with the social support they are often lacking.
She thought her heart would go out to cancer patients, but as she walked into their rooms she noticed they were usually surrounded by friends and family members.
It was the sickle-cell patients who were always alone.
Alendy started to seek information about the disease and quickly realized there wasn’t a lot of research available. From that point on, she made it her mission to raise awareness.
With a team full of students, she created the Stop the Sickle Cycle Campaign to provide programming on the University of Florida campus to work toward breaking the silence surrounding the disease. The concept was developed by the campaign’s Art and Layout Director Darrell Stevens.
To kickoff the month of events, the campaign members took on the task of painting the 34th Street Wall. With a bright yellow background, red, black and purple letters, and carefully crafted sickle cells, the campaign was advertised on the wall for all to see.
September 1st marked the launch of the Stop the Sickle Cycle Youtube Channel, which allows students to see what life with the disease is like. The channel currently features documentary-style video clips meant to educate those who know nothing about the disease and raise awareness and support for others who are living with it.
“We want to give them voice through the Youtube channel,” Alendy said. “We want it to serve as a hub for anyone to be able to say, ‘This is my story. I want to be heard. I will be heard.’”
One of the main focuses of the campaign was an ongoing blood and bone marrow registry and sickle cell screening through LifeSouth Blood. While passing out fliers about the campaign, a student walked up to Alendy and told her she appreciated her efforts. The student then whispered, “I have sickle cell, so I won’t be able to donate blood.”
Although it was gratifying to know her efforts were appreciated, what surprised her about the situation was that the girl whispered she had the disease as if she was embarrassed and ashamed for anyone to know.
“It shouldn’t have to be whispered,” Alendy said.
According to the Sickle Cell Disease Association of America, Inc., 1 in 12 African Americans carry the trait, and it affects approximately 80,000 people in the United States with those of African descent being affected in the greatest numbers.
Alendy believes it’s under-researched and overlooked because it is a minority disease. There are not enough support groups and charity events like walks or runs like there are for other diseases.
Her goal is to break this cycle through health education.
The campaign teamed up with the Black Student Union health affairs cabinet, Blacklisted Magazine, the Association of Black Communicators and the Minority Association for Pre-Health Students to host the “Sickle Smart” Forum.
On Sept. 24 in Florida Gym Rm. 100, red and purple wristbands, which represent a sickled red blood cell, were placed on every desk in the room.
Each student was asked to take an index card as they entered. Most students had white cards, but a yellow card meant you carried the sickle cell trait and a red card meant you had the disease.
Trimane Sheffield, 19, received a red card and stood up to read the experiences of a sickle cell patient that was written on the back of the card.
“It made me feel empathetic,” he said. “The card demonstrated more than just a medical problem. It becomes an academic problem and eventually a social one as well, as peers begin to view you differently.”
Sheffield said the forum was an enlightening exchange of beliefs, from doctors, researchers and patients. It enabled those with the trait or disease to describe the issues they face.
The main concern with sickle cell is that the body’s organs do not receive enough oxygen. Something in the body or the environment triggers the blood cells to sickle. They harden and hook on to each other, forming clumps making it more difficult for the oxygen carrying red blood cells to reach the organs.
“It’s as if clumps of gum are stuck in a straw, blocking anything from getting through,” she said.
Sickle cell patients are disadvantaged because their hearts must pump harder than normal, which is why they can’t be as active as their peers and must avoid certain weather conditions, she said. In a sense, this causes the organs to gasp for air. Students can be in the hospital anywhere from five to 15 times a year.
The sickle cell movement needs more research, volunteers, support groups and tutoring services. Without funding, none of this will be possible.
Campaign members introduced a donation box at the forum, which is now located in the Black Student Union office in the Center for Student Activities and Involvement Office.
After successfully recognizing Sickle Cell Awareness Month, Alendy said she will continue to raise awareness about the disease until she sees a change.
The Stop the Sickle Cycle Facebook Fanpage says, “It’s October now, but the campaign doesn’t have to stop here.”
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