By Nicole Fitzgerald
I’m a 46-year-old woman and growing up I never understood why I looked so different. As I started to grow, I only developed a few teeth, my hair was extremely thin and my skin was dry. I had dark marks along the side of my nose, and red blotches on my face.
I only had half of my eyebrows. It’s like they stopped growing mid way. I have very little leg and arm hair. I used to have to wear this thick white zinc type of cream because the sun would just burn me so bad.
I was diagnosed with ectodermal dysplasia at a very young age. My mom knew there just wasn’t something right. As I grew older, my mom did everything she could to help me feel normal.
I remember my first set of dentures. I was extremely happy to get them. But, as an adult now looking back at the photos, the size of the dentures didn’t fit my face.
Finding My Way
As a teenager, I had a hard time connecting with people because my hair was getting even thinner. As I looked around, I saw all the beautiful normal girls with beautiful, real teeth, real long hair, silky skin, and breasts.
I never developed any breasts. As a teenager/young adult, it was extremely hard to face my peers because of the way I looked and my lack of being normal. I didn’t finish school because I felt it wasn’t the place for me.
As I grew into adulthood I turned to plastic surgery. I went to several doctors, but due to my birth defect and the fact that they have never heard of it, I was denied the service. I researched over and over to learn more about me and what I had because I didn’t want to give up on trying to look like a women, feel like a women.
I finally found a doctor in Orlando, Florida, who knew exactly what I had when I mentioned it during my first meeting. It was a great feeling that I didn’t have to pitch my birth defect and try to make someone understand. He never left the room to Google my issue. He knew exactly what I was dealing with.
Feeling Like a Woman
We discussed my options and what he could do for me to help me feel more like a woman. I worked so hard to pay for my breast surgery. The day of my surgery, I was extremely excited.
As I walked in the door to make my final payment, my doctor advised me to keep it and buy myself some new clothes. I was so overwhelmed. I went in and had my surgery done.
The doctor did the best he could. They’re not perfect but they are mine and I now feel like a woman. I have had those same implants for over 20 years. I know that’s probably wrong but I don’t want to go back through the “no’s” again. I have checked into replacing them and the cost is just out of my range.
But, I feel like if they aren’t broken, don’t fix it. I know I will probably get some backlash on that but no one will ever understand the way I felt before, during, and after. No one will ever understand the hurt the “no’s” caused me.
I then grew into my teeth, yes the ones from my teenage years. I tried wigs and clip-in extensions. Now, for the past 28 years, I have been seeing a hair stylist who does a liquid cap quick weave that I absolutely love. He has taken me beyond my comfort zone and has helped me feel beautiful.
I remember the first time I sat in his chair and we tried this procedure and he turned me around to look at myself in the mirror. I broke down in tears. I had never seen myself more beautiful. I learned how to draw my eyebrows on. They are not professional by far, but I like them. I never really learned how to apply make up, but I try.
Hoping I Can Help
I decided to write this because there may be someone else out there like me that feels the same way I did and sometimes still do. I can share my experiences. I can understand, I can relate.
I have had children of my own and that was always a worry for me. Would I pass it on to them? Do I really want them to live the life I lived? I could have never made it this far without my mother and my sister always cheering me on.
I am thankful for the support that I had from my family. I could only dream to look as normal as my beautiful younger sister, Kerrianne, who was born without a birth defect. She has always protected me and stood by my side through it all. She’s my best friend.
And I have to say thank you to my mother Donna, because of her, I never gave up. She made me strong, determined and never held me back for being different.
To this day, I still don’t understand why I was born this way. I just learned how to deal with it. I hope my story can help someone else that may be dealing with this.
Nicole Fitzgerald is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Florida and is affected by ectodermal dysplasia.