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Diana

Born June 1988  |  ​San José, Costa Rica

Living with DEB

“No one really knows how long I’m going to live. So I live each moment as though it is my last. I’m always smiling. I think it’s God."  - Diana

 

When I was in first grade, all the kids would ask what was wrong with me,” says Diana, a petite 27-year-old with bright eyes and a glowing smile. “The other kids thought I was contagious. They would look at me as though I was an alien. Because of my limitations they saw me differently than they saw themselves. We lived close to the school and during recess I would go home—I said it was to use the bathroom, but really it was because I wanted to cry.”


From the very beginning, life has not been easy on Diana. Within 15 minutes of birth, she showed signs of her condition, dystrophic epidermolysis bullosa (DEB). “My mom tells me I cried terribly,” she says. “My skin was like a wet sheet of paper.”


“When we touched her, her skin would stay stuck to our hands,” her mother, Adelaida, agrees. “Her whole body was open wounds. She was taken to the children’s hospital in San José, and at two days old she was diagnosed.”


“At that time the doctors told me she might not live another day,” Adelaida says. “But God has a purpose for her. She is now 27. She is the oldest person in our country alive with DEB. I pray every day for her.”


Diana lives with her mother, her sister, her seven month-old niece, and Lulu, a pet cockatiel. Every two days, her mother, who works as a seamstress out of a shop at the front of their house, helps Diana to remove the bandages that cover her body from her hands to her shoulders and her hips to her feet. “It takes the better part of a day”, Diana says. “We start at noon, and sometimes go till eight p.m. I have to go really slow and put mineral oil on to try to not rip open the wounds. But it’s impossible, they always rip open. There is always a lot of blood. My hemoglobin is often as low as six—it should be at eleven or twelve.”


“The first part of rebandaging is too painful to talk,” shares her mother. “There is a lot of crying and blood. But afterwards, when I am putting her bandages on, we talk. I tell her things from when I was a little girl. I put music on. We try to be light.”


“On a normal day, there is always pain,” Diana says. “The doctor’s ask where my pain is, from one to ten. And sometimes I have to say 100. My whole mouth is an open wound. It ’s terrible pain to eat—I always have blood blisters in my mouth.


“Diana has yet to have used a GI tube, though the doctors would like to give her one. “They want to put a balloon in my esophagus,” she says. “But they are also afraid it might rupture.” Diana has had six surgeries on her hands, all of them extremely painful and largely unsuccessful. “For me, the process of recuperation is longer than the beneficial effect of the surgeries,” Diana explains. “I finally said no more, it’s too painful.”


“Sometimes I feel down,” she shares.


“When I have to change my bandages, and it is hard. But the pain teaches me that I’m not the only one with pain. That there are a lot of others who hurt. And it teaches me that you have to keep going forward. I want to help others to feel strong and continue forward.”


Following this passion, Diana gives motivational talks at universities and speaks to other families affected by epidermolysis bullosa, urging them to not hide the condition. “They need to have contact with others,” she says. “To remain joyful and playful. They are here for a reason and God is the only one who knows how long they are here for. I speak to them and say even though there is pain, we have to move forward, and we have to help others to move forward. After the storm comes peace.”


Another great passion of Diana’s is dance. “Last year I went to the national ballet with my sister to see The Nutcracker,” she says. “It really had an impact on me. I’ve always loved dance, but with my condition I’m not able to do it.” Even though Diana realizes she may not be able to dance freely, since seeing The Nutcracker she has aspired to learn about the form and understand its history and positions by researching on the internet and observing ballet classes. “Last night I dreamed I was wearing a tutu,” she says with a twinkle in her eye.


This light in Diana’s eyes is striking, as well as the angelic radiance that emanates from her, even as she speaks about the terrible difficulty of her condition. “I’ve always been this way, since I was a child,” she explains. “Even when I am in pain, I feel this way. Whenever I see anyone in the street who is serious, I always smile at them.”


“There’s a phrase in a song that I really like,” she continues. ‘No conoce la calma del mar que no ha vivido la tempesta—You cannot know the calm of the sea until you’ve experienced its storm.’ No one really knows how long I’m going to live. So I live each moment as though it is my last. I’m always smiling. I think it’s God.”