Jalen describes herself as nice, intelligent, and bubbly – and she’s right! She’s a ray of sunshine when you talk to her. The 25-year-old from Maryland loves trying new foods, and adores animals, especially her two dogs, Milo and Oreo. And watch out, because she loves fast cars!
We recently sat down to discuss her life and her ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome story.
Finding New Hair Styles After Hair Loss
Jalen experienced hair loss as a teen.
What would you say to younger girls with EEC syndrome who may be losing their hair or having bald patches? What are some of the things you do for your hair, styling it or caring for it, to help them understand what they could do?
I do suffer from extreme hair loss which is one of my biggest insecurities. My favorite part of myself was my hair. I was really upset with losing a lot of my hair, because I had really long, nice, pretty hair. I was like, dang, I hate this for me. But you get used to it, and there are alternatives. I would try to stay away from the different dyes and stuff.
Also, if you’re like me, and I like to get my hair braided, try to stay away from the heavy braids because that can cause a strain on your hair as well. I had fine hair, so the braids would slip out sometimes. Keep your hair healthy and moisturized. If you are losing hair, you can go to different wig styles and caps. I’m a big wig girlie! I love going different colors. And you can just pop them right off, on and off.
There are so many different options for wigs. We have braided wigs, long, short, different colors, curly, and straight. If you feel comfortable with doing that, I would say do that. And if you feel like you want to cut all your hair off, then do that. Just make sure that you’re comfortable with it.
How She Coped With Being Affected by EEC Syndrome
Jalen has ectrodactyly, which means she’s missing one or more of her digits in her hands and feet.
As you were growing up, and you had differences with your hands and had other EEC symptoms, how did your mom raise you to cope with that?
My mom would tell me to not hide it. I always listened to that. In elementary school, my principal was awesome! She was no nonsense. She always looked out for me. My teachers let me know that if I had a problem, to come to them, they’ll handle it. They wouldn’t tolerate any teasing or negativity. As I got older, I got confident with it, because it’s here to stay. It’s not changing.
I’m not ashamed because I can literally do everything. I drive, I cook, I can do anything. So it doesn’t really affect me negatively. I have a family who are very protective and they’ll defend my honor. I was able to walk with pride and keep my head up. As a kid, unfortunately, it’s going to be hard. Other kids don’t know sometimes. They know better but they don’t always know what’s going on, and sometimes that’s how they react about stuff that they don’t know much about.
How She Responded to Bullying
Living with EEC Was More Challenging During Childhood
What would you tell a little girl or boy who is affected by EEC and someone’s making unkind comments to them or bullying them?
I would tell them to remain solid and keep their confidence and their head up. Unfortunately, that happens sometimes, but that’s just how the world is. But, you never let people tear you down, because those same people, they have something that’s probably wrong with them that they’re not confident about. Nobody’s perfect. Always seem positive. Be you. Everyone’s different.
As long as you’re a good person to people, and a good person to yourself, you’re going to be fine, I promise! And, if you have those resources, like teachers or family, talk to them and let them know what’s happening, because nine times out of 10, they will help you. Always seek out advice if needed. Don’t hold anything in. Talk to people if you’re feeling uncomfortable or sad.
Finding Comfortable Shoes For Feet With Ectrodactyly
Individuals with EEC syndrome and ectrodactyly in their feet often talk about how it can be difficult to find a good fit on a shoe, depending on the configuration of your foot. Has that been something you experienced?
Yes. I can wear all shoes, but that doesn’t mean that it’s going to be comfortable for me. I have certain shoes that I really love to wear that are most comfortable for me.. Uggs are really a big thing for me. I love Uggs. They’re wide enough for me to wear and for my feet to be comfortable. I’m also really big on Crocs. They really help.
I have a lot of shoes, but it’s just some shoes that I only wear for specific events. I have Vans. They’re okay, but I wouldn’t say they’re the most comfortable. But, I could still put them on my feet and wear them. I have a lot of Jordans, too. Typically, you have to break the shoe in. I know that’s kind of normal for other people, too. But for me, I have to break in my shoes for them to be comfortable. A lot of Sketchers or sneakers are good, too.
Ask Me If You Have Questions About EEC
What has been the most difficult part of having EEC, and what has helped you through it?
People assume that you can’t do certain stuff. I don’t feel like I have to prove myself to anyone but myself. You can ask me. You don’t have to go and ask somebody else about me because I’m the best one to tell you about me. Just talk to me. I won’t take any offense, because I understand. But at the same time, I’ll let you know if I can’t do something. A lot of times out of 10, it’s going to be, “yes, I can.”
Because I can.
Don’t Let Your Challenges Define You
Jalen has big dreams. She’s a manager at a retail store and has studied culinary arts. But, she thinks about being a veterinarian and traveling to see the world and eat different foods. In terms of her health, she wants to get the dental treatment she needs. Whatever she chooses to do, she’s not going to letting obstacles define her EEC syndrome story.
“I can honestly say my journey has not been easy,” Jalen said. “As a young adult it still gets hard. But I am now more confident in myself. I know that I am a great person. I’m intelligent, caring, and more. Most of all, I know my worth! My syndrome does NOT and never will define me! I am an example of a person that has and will continue to face challenges, but can successfully push through them.”
To anyone that is reading this, YOU ARE GREAT. NEVER LET YOUR CHALLENGES DEFINE OR MAKE YOU! These challenges helped me become the strong young woman I am today.
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