Seeing the person beneath the skin

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It's 82 degrees Fahrenheit outside and Diana Gilbert is wearing a wool sweater.

Mrs. Gilbert is a senior letters of credit administrator at Butterfield Bank. She is also one of three known people on the Island with a rare condition: ichthyosis.

The Royal Gazette met with Mrs. Gilbert, 34, and two other people with ichthyosis — Agina Smith, 13, and Laura Ashton, 23 — as Ichthyosis Awareness Week kicked off yesterday.

  • Agina Smith, 13, Laura Ashton and Diana Gilbert who all suffer from the rare condition Ichthyosis.

    Agina Smith, 13, Laura Ashton and Diana Gilbert who all suffer from the rare condition Ichthyosis.


It's 82 degrees Fahrenheit outside and Diana Gilbert is wearing a wool sweater.

Mrs. Gilbert is a senior letters of credit administrator at Butterfield Bank. She is also one of three known people on the Island with a rare condition: ichthyosis.

The Royal Gazette met with Mrs. Gilbert, 34, and two other people with ichthyosis — Agina Smith, 13, and Laura Ashton, 23 — as Ichthyosis Awareness Week kicked off yesterday.

All forms of ichthyosis include dry, rough, scaly skin. Some forms are present at birth, others appear later in childhood.

One million Americans suffer from it and certain types are more prevalent than others. It also varies in severity.

Some types simply look like dry skin and can be treated with lotions from the drugstore, while other forms, such as lamellar ichthyosis, which Miss Ashton has, have more severe symptoms.

The scaling can be very painful. It can restrict the body's range of movement, pull so tightly around the face that the eyelids turn outward, cause deep cracks or fissures at the joints, adversely affect hearing and more.

A genetic abnormality is present in all types of the condition, but the abnormal gene has not yet been identified for all forms of ichthyosis. It is diagnosed mainly through skin biopsies and blood tests.

"Feeling cold is a common symptom among people with all types of ichthyosis," said Miss Ashton.

She works as an analyst in the risk management department at ACE Tempest Life Re.

"I've heard at conferences on ichthyosis that we may be cold a lot because our skin doesn't properly keep heat inside of our bodies but lets it out too much," she said.

Despite their skin not trapping heat very well, many people with ichthyosis are also prone to overheating because the scales on their skin don't allow sweat to properly exit their pores.

"Now that I have reduced scales on my skin, thanks to the oral synthetic retinoid [vitamin A] treatment I have taken since the age of 14, I do sweat a bit more than when I was a child and so am less prone to overheating," said Miss Ashton. "It can be hard in the summer, when everyone else wants the air conditioner on high."

Mrs. Gilbert said they wanted to raise awareness of ichthyosis on the Island.

"We wanted to get the word out," she said. "One of our goals is to one day have a place where people can come and talk about their skin.

"Not just ichthyosis, but for people with any skin condition, including burns. It is important that people not feel alone."

Mrs. Gilbert has Netherton syndrome, whose characteristics include red skin and short, fragile hair.

Miss Ashton said it was unusual for three people to have it within a small population.

"It can be genetic,' said Mrs. Ashton. "In my family, my parents are both carriers for the gene and didn't know it."

Mrs. Gilbert and her husband James have a six-year-old daughter, D'Jae, who does not suffer from ichthyosis. They are expecting another baby in April.

Whitney Institute student Agina had symptoms of ichthyosis from birth, but her mother, Tonya Smith, had a hard time getting a diagnosis.

"I noticed there was something wrong a week after she was born," said Mrs. Smith. "She broke out in scabs all over her body. She was born with a head full of hair which she gradually lost as her skin started flaking more. Ever since she was born there was something wrong."

Unfortunately, many doctors dismissed Agina's condition, at first, chalking it up to a rash or eczema.

She was finally diagnosed with ichthyosis vulgaris at eight years old through a skin biopsy on her back.

"Then we had treatments which actually did something," said Mrs. Smith.

Ichthyosis vulgaris is characterised by polygonal, flat, whitish scales on the skin that might be darker in certain areas of the body. There are also markings on palms and soles, and often scaling around hair follicles.

Mrs. Gilbert said the skin condition tends to be hereditary. Her grandmother suffered from eczema later in life, and in an earlier generation a baby with symptoms of ichthyosis didn't survive to childhood.

Babies with certain types of ichthyosis, such as Netherton syndrome or lamellar ichthyosis, often suffer from skin infections.

Miss Ashton was a 'collodion baby' when she was born. "It is like a whole layer of skin that encases pretty much the entire body," said Miss Ashton. "It looks really weird. They were very concerned and they kept me in the hospital for about three months to try to prevent infection. After that I went to a hospital in Boston."

She said it helped her parents to know what it was, early on. And it also helped that soon after she was born, they befriended Mrs. Gilbert.

Everyone affected loses flakes of skin, which can be a source of embarrassment.

"All people shed microscopic skin cells constantly, but the difference with us is that ours collects then comes off in larger pieces," said Miss Ashton. "It's been described as a 'traffic jam' of skin cells."

She said the condition can take an emotional toll.

"What takes its toll is the teasing when we're younger from peers," said Miss Ashton. "There is the ostracisation by people who think we're contagious or who think our 'un-coolness' is contagious.

"There is the intense staring, the recoiling from other people. We are trying so hard to be seen for our personality rather than our skin."

She said sometimes people with ichthyosis suffer from the feeling that they are untouchable and unlovable.

"The loneliness, and the feeling of being trapped in our skin, causes much anguish and is exhausting," she said.

The disorder can be particularly difficult for teenagers like Agina.

"A lot of people at school tease me, but I do have a couple of friends who have my back," said Agina. "I try to ignore most of the things.

"I am hoping it will get easier as I get older. Still going out and having people stare at me is hard."

She enjoys dancing, and crocheting. "I am a computer freak, and I like to watch television," she said.

Agina wants to be a pastry chef when she grows up.

"I want to thank my church family at New Testament Church of God Miracle Temple and to thank those who have shown themselves as true friends."

Miss Ashton said it is important for people with ichthyosis to have support from friends and family.

"We find our strength in our families and friends who love us no matter what. We also take strength from those colleagues and strangers who treat us like anyone else."

But she said ultimately, they find strength in themselves.

She said the group hoped that by educating the public about their skin condition they would heighten the community's sensitivity not just to people with ichthyosis, but to anyone who stood out.

"One of my close friends has told me that by knowing me and understanding what I deal with, she is more sensitive to people with all types of physical differences," said Miss Ashton. "For example, she remembers not to stare at these people because she knows, from me, how such a simple act can really hurt their feelings."

For more information contact Miss Ashton at l.ashton@gmail.com">laura.l.ashton@gmail.com, Mrs. Gilbert at preciousdjae2003@hotmail.com or 232-7706 or Mrs. Smith at tonyawsmith@hotmail.com.

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