We’re rejects who found each other’
After 42 years, Diana Gilbert is used to the stares.
People are curious about her skin, which constantly flakes, and her slicked-back hair, which is incredibly brittle.
Although laid-back about it now, she wasn’t always so blasé.
“When you’re young, children are going to tease you if you’re not a part of the norm,” she said. “I think it made me who I am. I think because I was always so open to share my story, it made me open to a lot of other things.”
Ichthyosis is a family of genetic skin disorders characterised by dry, scaling skin. About 300 babies are born annually with a moderate to severe form of the disease, which usually presents at birth or within the first year. There is no cure, however researchers continue to develop ways to manage it.
Mrs Gilbert was certain she’d be alone because of the way she looked, but in her teenage years she found an ally.
“In high school, people are very brutal about certain things,” said James, her husband of 20 years. “We were both rejects who found each other. You have to have thick skin, no pun intended, to ignore everything else around you and to stick to what you believe is in your heart.”
After a short break-up, he decided to formally commit.
“I said, I’ve seen her through the worst times, so why not stick with what I know? I popped the question. She was shocked. One of her dreams was always to get married and have children and she never thought that would happen.
“I’ve been with some good-looking women in my life and they have had more issues than my wife. Sometimes, issues are more mental than physical. You look at how you match with the other person and that’s what you go by. Love is love; you are with who you want to be with.
“I don’t dictate what anybody does with their own life. I did not go into the relationship thinking I would bypass and let things happen. To understand my wife, I had to study, to learn and figure things out for myself — her mood swings, her needs and wants. It’s a lot to take in, but I plan to stick with it as long as I can.”
Tests in Seattle on July 4, 2002 revealed that Mrs Gilbert would not pass her form of ichthyosis, Netherton Syndrome, on to her children. D’Jae was born the following April and her brother David seven years later.
The teenager said she has learnt a lot by watching her mother.
“You hear so many stories of people inspiring others and helping people to view things differently,” said D’Jae. “It’s the connection you have with them that matters to me. The bond you share and remarkable experiences spent together can change you.
“There is a high amount of discrimination and hatred in this world. It’s important that everyone should be safe and feel completely comfortable with who they are as a person. I know how hard my parents try to spread that information to those who are ashamed of their physical and mental characteristics.”
Ichthyosis has many definitions because “it is an umbrella of over 20 types”, Mr Gilbert explained.
“There are three confirmed types in Bermuda,” he said. “Within a similar-sized population to ours, 60,000, you normally get one. In the worst-case scenario of ichthyosis, some people are not able to grow up.
The skin is wrapped so tight that everything under it is restricted. Their skin is like an armour and, as they get older, it gets thick and scaly; their hands look like a scrubbing pad. My wife’s condition is very mild compared to many other cases. Her skin just flakes off.”
Constant cold is another problem for Mrs Gilbert who also can’t sit with her skin exposed to the sun too long or it “literally cooks” and develops blisters. She also has a persistent itch.
“Many of the [problems people with ichthyosis face] can be life-threatening, such as dehydration, skin infections — fungal and bacterial — overheating and rapid calorie loss,” she said.
“Proper nutrition and water intake is essential. The psychological toll is huge and often leads to teasing, bullying, isolation, low self-esteem and depression.”
She believes the skin cancer that doctors discovered in 2014 might also be related to her illness.
“I noticed a spot on my right breast and thought it was just ringworm,” she said. “It was about the size of a dime. I went to the doctor who sent me to [King Edward VII Memorial Hospital] once a week, to get it measured.
“The dermatologist here recommended I go to Yale Dermatology where the doctors specialise in ichthyosis. When the tests came back, they said I was in the early stages of squamous cell carcinoma.”
Her surgery in 2015 to remove the polyp was a success.
Mrs Gilbert had spoken at schools and the health department about her illness; last year she started posting on Facebook.
“I received some positive feedback,” she said. “Many people had no idea of what I had until then.”
Especially gratifying was being able to support others with ichthyosis. Mrs Gilbert thinks she may have helped “four or five” who were considering suicide.
She feels fortunate that she has someone who has stuck by her through it all.
“Every marriage has its good points and bad points, but James probably is the best person who has been there with me in dealing with my skin condition,” Mrs Gilbert said. “He’s willing to get out there and talk to people about it.”
Invitation to learn about ichthyosis
James and Diana Gilbert are inviting people to learn about ichthyosis at a fundraising dinner on Saturday.
Cash raised will help them get to Tennessee in June for the Foundation for Ichthyosis & Related Skin Types’ biennial conference.
Mrs Gilbert has been plagued with a form of ichthyosis, Netherton Syndrome, since birth.
“Doctors think it was caused by a mutation carried by both my parents, but my parents haven’t taken any testing, so we don’t know,” the 42-year-old said.
There isn’t a cure. To cope, Mrs Gilbert carries around vaseline and drinks lots of water to keep lubricated and hydrated.
“I also eat constantly, because I lose minerals and proteins faster than the average person.”
Her hope is to get a free checkup at First. The only other option is a trip to Yale’s department of dermatology, where five minutes with a specialist can be costly.
Asking for a handout, however, is something she is uncomfortable with.
“The dermatologist here wants me to get checked but we have financial obligations,” she said. “I’m so used to helping other people — this is the hardest thing I’ve ever done in my life. But if you don’t ask or try, you already know the outcome.”
The fundraiser was her husband’s idea.
“Your skin can kill you if you don’t treat it right,” he said.
“You can go to a doctor who believes they’re fully informed, but they don’t know what ichthyosis is. I’m trying to raise awareness on skin conditions because anyone who has one has to understand the importance of taking care of themselves.
“They have to understand what causes them to flare up and, if they get a flare-up, how it should be taken care of. At the conference, Diana will get to meet other people and learn what’s happening with new research.”
Mrs Gilbert added: “I was very emotional when we attended First. I was surrounded by people who looked just like me, who feel the same experience I feel. It was very overwhelming to know that although they were strangers they were going to help me move forward.”
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