Bermudian Diane Gilbert, 31, is a devoted mother, a wife, a model employee and a community volunteer. She also happens to have ichthyosis, a rare genetic skin condition.

Ichthyosis causes a person’s skin to build up and scale, causing it to be extremely dry, among other problems.

Most types of ichthyosis are present at birth, and are life-long. Currently, there is no cure, only treatments.

The Royal Gazette Lifestyles section recently sat down with Mrs. Gilbert and her husband, James Gilbert, to learn more about ichthyosis.

Mrs. Gilbert believed that telling her story, might help others who feel set apart from mainstream society.

She was inspired to tell her story after seeing children at skin conferences fearlessly standing up in front of hundreds of people to talk about their skin problems.

She is only one of two people in Bermuda with the condition. All her life, her skin problem has caused her to stand out in a crowd.

“I never thought I would get married,” she said. “You go through life thinking that. I had so many problems being teased in school that when I was young having a boyfriend was out of the question.”

However, she met and fell in love with her future husband when she was only a teenager.

It was a typical high school romance. Every day she would see James Gilbert getting off her bus when she was getting on the bus.

“It started with a note,” she said. “I was really nervous. I didn’t really know anyone to talk to about how I felt about James.

“I told this girl, ‘I have a note, and I like this boy and I don’t know what to do’.”

Mrs. Gilbert handed her friend the note and her friend rewrote it entirely using red ink.

Mrs. Gilbert did eventually get up the nerve to pass it to her sweetheart, and the rest is history.

“I proposed to her in front of my mother’s garage,” said Mr. Gilbert with a laugh. “I didn’t give her a lot of space so she could go running screaming into the house.”

The couple have been married for nine years now and have a four year old daughter D’Jae.

Mrs. Gilbert learned that she would not pass the condition on to her children at a Foundation for Icthyosis and Other Related Skin Types (FIRST) conference in Seattle, Washington in 2002, not long before her daughter was born.

“When I was a baby, I went to Great Ormond Hospital in London and was diagnosed as having one kind of ichthyosis,” she said.

“Twenty-seven years later I learned that what I actually have is a different form of ichthyosis called Netherton’s.

“I also learned that as long as my partner and I are not related, there is no way I can pass it on.

“Whereas people with other kinds of ichthyosis can pass it on to their children.”

Both of Mrs. Gilbert’s parents carry the gene for the disease, but she has a 14-year-old brother, who did not inherit the trait.

Her husband said: “Because I do not have the gene, there was only a ten percent chance D’Jae will have the gene, and even less of a chance that she would have the condition itself.”

One of the reasons, that Mrs. Gilbert wanted to tell her story, was her daughter.

“I think this is the time to talk about it,” said Mrs. Gilbert. “D’Jae is old enough.

“She is not starting to ask questions yet, but she says to me that she wants to be a doctor so she can make my skin better. I think that is the kind of encouragement that you need.”

Mrs. Gilbert often gets concerned questions from small children.

“A lot of people, especially children ask, ‘what happened to your skin?’ In high school I did a volunteer day at my old primary school.

“I was reading to the class. They were five-year-olds. They were not listening to what I was reading, so finally I stopped reading and asked them if they had any questions.

“They wanted to know what was wrong with my skin. So I said, ‘I have a skin condition that I was born with. You can’t catch it if you touch me and you will not get what I have’.

“During lunchtime they mobbed me. It is just to show you that children at that age do not discriminate. You have to teach children what is right.”

Mrs. Gilbert has learned that if you don’t tell adults what is wrong with you, they will make their own assumptions.

“They will make these assumptions without even knowing you,” she said. “They will make them just by looking at the person, and that is not right.”

Mrs. Gilbert said that although she is only one of two people with ichthyosis on the Island, there are many people with other skin conditions such as eczema and psoriasis.

“They need to have some kind of a skin centre here,” she said. “Not like a skin clinic, but somewhere where people with skin conditions can meet and talk about it.

“They would be able to talk about what works and what doesn’t work. I have been to five conferences since 1998 and I have learned so much.

“It is funny when you meet people who look just like you, and you hear their stories and you say, ‘gee that is exactly how I feel’.”

Unfortunately, ichthyosis can be fatal. Mrs. Gilbert has two friends who have died from complications from it.

“I believe the medication they were taking caused them to develop an infection,” she said. “They were very close to me. It does make me realise I need to start taking better care of myself.

“Now I need to be here for my family. Sometimes I can be a little stubborn because I want to get out there in the community and help out.”

People with ichthyosis can get infections easily and get second degree burns, where other people would get a sunburn.

When this happens to Mrs. Gilbert, she has to go to the hospital to get steroids.

“My body can swell up so much that I can’t walk or move,” she said. “A lot of people I have met have it worse than I do.

“I have met people in wheelchairs, or who walk with walking sticks. Their skin is so bad they are on medication all the time.”

Mrs. Gilbert said she couldn’t have gotten through it all without the strong support of her family including her parents Margaret and Llewelyn Hall and her brother, Brian.

“We have been through a lot,” she said. “I feel like I have been married for 90 years with what we have been through.

One thing that has helped Mrs. Gilbert is being a part of the FIRST organisation based in Pennsylvania.

“When they first started 21 years ago, they weren’t even sure what ichthyosis was,” said Mrs. Gilbert. “We have come a long way since then.”

She said she is very grateful for the support of her family and friends. “With this kind of support you can get through anything,” she said. “It is never easy when you are an outcast in society. “When you get older you learn how to deal with it. Knowledge is power. I still feel like an outcast. I don’t have that friend-to-friend feeling that other people have.

“I hear other people talking about going out with their girlfriends and I don’t have that. A lot of people who are my friends are older and mature people. I really don’t have anyone my age.”

So she finds other things to keep her busy. She teaches Sunday School at St. John’s Church and volunteers wherever she can.

“Anything you do in life is a challenge,” she said. “It is important that people should tell their story. If you think you are different in any way, if you are not part of the mainstream you should tell your story. You never know who you will inspire. I am always here and ready to help anyone who may want to talk to me.”To learn more about ichthyosis go to www.ichthyosis.com and scalyskin.org or email Mrs. Gilbert at preciousdjae2003[AT]yahoo.com.

Knowledge is power