“I would have given anything to know there were other kids like me. I was the only one and it was lonely, ” Alejandra said. Then in 2009 when she was serving as a camp counselor at Camp Dermadillo, her wish came true. “The entire week I was overwhelmed, just knowing someone with my condition was there. The last day, Dr Bree pulled me over and introduced me. We only talked for a few seconds, but it rocked my world! I was so happy to meet someone like me,” said Alejandra. At 28 years old, she still remembers that day as an amazing experience.
Alejandra has epidermolytic ichthyosis (formerly known as epidermolytic hyperkeratosis). It is a rare genetic condition that causes the skin to be diffusely red with an increased risk of skin infections. While the skin appears scaly and thickened, it is also very fragile and blisters easily. Because of the genetic changes in the skin cells, it is a permanent condition that does not have a cure. Treatments, while available, can be challenging and require an extreme amount of time each day.
Alejandra was born in Puerto Rico. At birth, she had what was described as “burned skin.” Her skin was peeling off and her face was bleeding. She knows it must have been so difficult for her mom to see her newborn baby affected in such a way. Not having answers and not knowing what the future held was overwhelming. It took several months before the doctors could do a skin biopsy, which then had to be sent to the United States to help confirm a diagnosis. She describes living in Puerto Rico with her condition as living in a black hole that was lacking in resources. Fortunately, in 2008 she moved with her family to Houston. With the help of medication and an intensive daily skin care routine, her condition is not as obvious as it once was.
She was married five years ago to a “true Texan” she met at church. Her husband likes to hunt and fish, but because of her skin condition she needs to spend more time inside. Her skin burns and tears easily. She also has less sweat glands, so she gets overheated and playing sports is not possible. She fortunately has found other passions that include painting with acrylics, cooking, and learning to write code for computers, with a bachelor’s degree in biology.
The Love the Skin You Are In conference in June offered a panel discussion, with her as one of the panelists. They were asked by parents, “What can we do?” She said everyone on the panel had the same answer, “Encourage them.”
A Children’s House for the Soul offers a safe place for families to feel encouraged, supported, and protected–where there are no questions and no stares. Being with others with skin conditions and birthmarks helps kids gain perspective. They and their families are not different here. “You are not alone and you will survive. It’s a place where they can feel normal and relax.” says Alejandra.
“There is no magical secret. Don’t sugarcoat. We all want it to be better.” Alejandra said. “I’m so glad my mom just let me cry until I stopped. She was there to relieve my stress at the end of the day. Classmates can be so mean and kids don’t feel they have a voice to defend themselves. Sometimes, I just wanted to be part of the wall.” Alejandra said growing up has helped her learn to care less about what other people think, but she wishes she’d had a supportive group of other kids and families with skin conditions when she was a child. She is grateful that now other children have a place to fit in, where they don’t feel as lonely as she did.
Alejandra’s strength and spirit, along with the love of the family, has led her to be a role model, a mentor for children with skin conditions and birthmarks. Would you like to be part of this uplifting, honest, and encouraging community? Please join us for conferences, camps, support groups, and Bible studies by registering today. Love the Skin You’re In today!