Diagnosis leads to student advocacy

At 5 feet 8 inches tall, Jassamine Domino is often asked if she plays basketball. However, the 22-year-old graphic artist has never participated in sports, dance, cheerleading or any similar activity because of a painful genetic disorder.

Domino was born with epidermolysis bullosa (EB), a skin condition in which the layers of the skin are unable to bond causing blisters to form when the skin is exposed to friction. Walking, exposure to heat or even a gentle hug can result in painful, disfiguring blisters.

Symptoms range from mild blisters to severe external and internal lesions which may cause fatal complications.

Domino suffers from the least severe form of the disease and said that her condition has improved over the years.

According to statistics published by the Dystrophic Epidermolysis Bullosa Research Association of America, EB is rare. The disease affects one in every 50,000 live births in the United States.  

Domino said that in her hometown of Keene, Texas,"the doctors had never seen it [EB] before." She had to travel to Dallas for a biopsy before she could be diagnosed, Domino said.

Despite the hardships caused by the disease, Domino said that her condition has made her stronger and helped her become the person that she is today, especially after a pivotal experience at Camp Dermadillo, a summer camp for children with skin disorders.

"In 2004 my mom and I went to a conference, and for the first time I met people worse than me. I saw kids in wheelchairs, babies with trachea tubes, and kids fed with tubes in their stomachs. Many of them didn't have fingers," said Domino. "I am just grateful for what I do have."

Since attending her first camp, Domino has not missed a single summer session as a counselor.

"Every year I leave camp a better person," said Domino. The kids are so independent. I met a wheelchair-bound girl who didn't need help for anything."

According to Domino, she is determined to raise awareness, because currently, there are few resources available for people suffering from the ailment.

"I want to start my own organization, and start my own skin disease camp because I can count on one hand how many there are," said Domino.

Domino encourages those who do not suffer from EB to volunteer to become camp counselors at EB summer camps and see what the kids go through, because according to her, it can be an eye-opening experience.

"We're all beautiful in our own way," said Domino. "It doesn't matter really what anybody says. It is important that you accept yourself for who you are."

More information about Jassamine Domino and EB can be found at jdomino.webs.com.