Covered head to toe in patches of dry, scaly skin, people only need to take one look at Kelly Benford to know she is different.
Benford was born with ichthyosis, which is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin, according to the Foundation for Ichthyosis & Related Skin Types (FIRST).
May is Ichthyosis Awareness Month. Each year, more than 16,000 babies are born with some form of ichthyosis and approximately 300 babies are born each year with a moderate to severe form of ichthyosis.
While some people are affected on certain sections of their body, Benford said her ichthyosis is considered moderate.
As a result of having dry, scaly skin, Benford said her skin sheds a lot, much like someone recovering from a sunburn.
“I shed every single day, all day. I could be standing still and I still shed,” she said.
On a scale of 1 to 10, Benford said most days her pain level is around a 4, but there are times it gets much worse.
“On a bad day, it’s hitting at 11. On those days, I can’t even move. I walk like I’m on stilts because I can’t bend my legs.”
On those painful days, the only relief Benford finds is from a three-hour long soak in the bathtub.
To date, there is no cure for ichthyosis. However, dedicated researchers and physicians have and continue to develop effective ways to help manage the disorder, according to FIRST.
To receive proper treatment, Benford has to travel to Tennessee or Alabama to see a specialist.
Benford’s parents did not know she would be born with this disorder and they didn’t find out until her first bath.
“After they washed me, my skin was coming off and they knew there was a problem,” she said. “They immediately went to work and they figured out what it was.”
Even as a young child, Benford knew she was different from other children who were able to simply run outside to play.
“I always knew my skin was different because I couldn’t do certain things like other kids,” she said. “I couldn’t play outside without wearing an extra amount of medicated lotion and wear long pants and long-sleeved shirts. … Sunscreen doesn’t do anything for my skin, it’s like mixing oil and water.”
The added precautions during the summertime are necessary for Benford, who said her disorder prevents her body from perspiring.
“The risk was I could overheat. My skin does not allow me to sweat, the only place I can sweat is my nose and my hairline. If I was playing outside, I had to use the water hose a lot to cool off because I was a walking heat box.”
While many people born with ichthyosis live a quiet, sheltered life, Benford said her family decided to take a different approach.
“My parents were the type who sat me down and said, ‘Look, your skin is bad. People are not going to accept you like we accept you and people are not going to love you like we love you.’”
Benford said her parents treated her like they would any other child and took her with them anywhere they went.
“Growing up, my mom exposed me, she was not afraid to tell people about my condition. She would get defensive with certain people and say things like, ‘Staring at her isn’t going to change her skin’ because people are ignorant. Adults were always the ones who stared at me. They would shield their kids from me because they didn’t want them to see me.”
In elementary school, Benford said her classmates, for the most part, accepted her.
“It wasn’t an issue growing up, I was picked on sometimes like other kids were for other things, but I was never bullied back then,” she said.
When she was in the sixth grade, Benford said someone called the Mississippi Department of Human Services on her mother claiming she was being abused and that’s what caused her skin to look the way it did.
“They said because my skin was so bad I must have been abused,” she said. “My mom handled it professionally and went to the school with all the paperwork from doctors to prove I have a rare skin condition.”
As Benford got older, the reactions from her peers began to change.
“Elementary wasn’t that bad, but middle school was the worst. I could never understand what I did that was so bad for everyone to continuously talk about me. I was bullied every single day,” she said.
To make friends, Benford said she began doing favors such as putting away her classmates’ lunch trays after they were finished eating.
“My dad would buy me snacks and I shared those, hoping maybe they wouldn’t talk about me that day. … I had a few real friends who were there for me, but I had to buy my way in with everyone else,” she said. “Seventh grade was, by far, the worst. I would never repeat that again in my life. That opened the door to my insecurities and worries about my skin.”
The years following middle school started to improve, Benford said.
While in high school at 15 years of age, Benford faced one of the most challenging factors yet in her life when her mother unexpectedly died.
“She was my greatest motivator. My mom always showed me nothing but love and all I want to do is follow her example. After she died, I knew I just had to keep moving. She was a fighter, she never gave up and I kept telling myself there was no way I was going to let her down.”
After graduating from Greenville High School, Benford was accepted into the Mississippi University for Women.
Alone in a city she was not familiar with, Benford said her first year of college was tough, but she also began to be exposed to people of various backgrounds.
During her freshman year, Benford found a girl online from Alabama who also had ichthyosis. The two communicated as pen pals until they eventually met in person a couple years later and have stayed close friends ever since.
“A girl came to the W my sophomore year with my skin condition and then I had a friend who attended Ole Miss who had a roommate with my condition. I ended up making three close friends who have my condition,” she said. “To this day, no matter how confident I am, I still have moments. I get my strength and inspiration from them because we’re in this together.”
At the W, Benford majored in communication with dreams of working for a radio station or as a TV broadcaster.
When she returned to Greenville, she interned at Delta News as an assistant. During her internship, she applied for a job as a reporter.
“They said I had the face and personality for it. But the producer, who is no longer there, told me it wasn’t because of the color of my skin, but the texture of my skin was the reason why I wouldn’t look good in front of the camera. … I left and I cried. I thought I had moved past people judging me for my skin.”
Keeping her chin up, Benford applied as a news reporter for the Delta Democrat-Times, which she did for nearly a year.
She is now a substitute teacher, which leaves her able to teach children about her condition and raise awareness about treating others with kindness.
Although there is no guarantee her own children could be born with ichthyosis, Benford said that is a big fear of hers.
“My greatest fear is bearing a child with ichthyosis. I would love my child unconditionally, but I wouldn’t dare wish this on my worst enemy, let alone my child,” she said. “I went through so much traumatic stuff, I almost took my life in seventh grade because I just didn’t understand why me being who I am made people just not like me. I didn’t understand why they couldn’t respect or understand I had a condition and I was just different. To think my child could go through that scares me to death.”
For anyone who may have ichthyosis or anything else that makes them feel different, Benford said it is important to stay true to one’s self.
“It’s so easy to be just like everybody else. It’s easy to look like everybody else. It’s so hard to just be yourself. Being different makes you amazing, she said. “Whatever the issue may be, you have to be yourself at all costs, no matter how it makes anyone else feel. No matter how bothered or uncomfortable someone may get, that’s just more motivation to keep going. There are people who will accept you for who you are and love you unconditionally.”
