A New Jersey man with a rare skin disease has agreed to appear in a TV documentary series in the hope of inspiring others with a similar condition.
For Glendora-native Kenny Krips, being born in the 1970s wasn't the most ideal. His skin condition called lamellar ichthyosis was almost unheard of, and treatment didn't come until the 1980s. His appearance that's different from others didn't only make him stand out, but also made him a perfect target for bullies.
However, that didn't deter him from accomplishing many things, including maintaining an active career in health care and social life. Moreover, he continues to inspire others, including appearing in TLC's Two in a Million, a reality series that aims to connect two people who share the same disease. He was also once a subject of an award-winning documentary.
For the TLC documentary, Krips met with Arizona woman Bobbi, who doesn't have a job, but is raising a family.
"From the minute I got out of the car and walked across the street to her driveway ... I felt like I knew her," said Krips.
Together, they aspire to change the mind-set of many, especially bullies, through their episode that aired on TLC on April 27.
"It's hard to believe in 2016 that people are still that way. I hope it tugs at the heartstrings of people who are the bullies," he said.
Putting The Spotlight On The Rare Disease
Lamellar ichthyosis is a rare genetic disorder diagnosed in one in every 200,000 children. It is characterized by the improper shedding of the skin, although it can also affect the internal organs.
The signs and symptoms of the disease can begin as soon as the child is born, in which he seems to be covered by collodion membrane. Once this membrane is shed within the next two weeks, the skin may appear scaly with varying degrees of redness. Sometimes the skin is described as similar to that of a fish.
This skin condition may be accompanied by issues affecting the ears, respiratory system, hair, ectropion (eyelids turning outward) and fluid retention.
So far, there's no cure, but treatments and management therapies are available depending on the specific condition and the extent of the disease. Babies born with lamellar ichthyosis are immediately moved to the neonatal intensive care unit where the vitals and electrolytes are monitored. It's not advisable to manually remove the membrane.
For long-term treatment and care, different skin care products such as moisturizers and emollients can offer skin protection, especially from infection. It's also possible to use antibiotics, as well as retinoid tablets. Surgery including skin grafting is an option in case of severe ectropion.
While the condition may be disfiguring and requires extensive care, Krips and all the others battling the disease are living proof they can still live normal lives.
