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.
Feeling Beautiful
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.
This is my niece and I am so proud of the beautiful person she has become despite the obstacles she faced growing up. No one knows why things happen as they do – only God knows the reasons. Nicole – not only has been knocked down from birth – but throughout the years she was knocked down more times than anyone I have ever known!! Nicole has always had the grace to get back up, shake the dust off and walk with her head high – for she is a fighter – a true believer in that just because you get knocked down doesn’t mean you have to stay there! For anyone fighting the defect – stand tall & proud! God made you for a reason- just like the rest of us. Stay strong as Nicole is – you ARE beautiful!!!!!
Glad Nicole has you and your support in her life! Indeed, she is beautiful. ~ Jodi, NFED, Director, Marketing and Communications
My dear one,
God placed you on this earth. A pure gift of life from his mighty hands.
You are the ray of light that shines across mountains. That ray of sun that reflects off our seas. Your eyes are the truth to your soul. You beautiful inside and out.
You bring laughter and love to all who know you. You were given the heart of a champoin. While you fight life like a loin.
We love you ..just the way you are.
We love this! Thank you for supporting Nicole! ~ Jodi, NFED, Director, Marketing and Communications
God placed you and you are a Strong women…
You are an example to us
We will try to be strong like you..
Thanks
Love this! ~ Jodi, Director, Marketing and Communications
I have a very hard time using the word beautiful for me and using mirrors. I often use others as a mirror and I don’t measure up to the standards. Thank you for your story. It will help others see beauty in themselves. I invite you and others reading this to our women’s group. We talk about this and I feel it is encouraging. Jill NFED Liaison and Fully affected by XLHED.https://www.facebook.com/groups/adultwomensgroup
To our beautiful friend, Jill. May you see in yourself what we do. Thanks for supporting women with ectodermal dysplasias! ~ Jodi, Director, Marketing and Communications
Girl!!! I gotta know more about this liquid cap quick weave!! I have been wearing hair pieces for 25 years or so and while it helps, it does make things complicated sometimes.
I can absolutely relate to EVERYTHING you wrote. It’s hard. It hurts. We learn to deal with it, but the pain never goes away. Thanks for your courage.
Would love to chat sometime. I’m joining the women’s group. see you there.
Hi, Moe. It’s always great to hear from you. Thank you for supporting Nicole and sharing your inspired words. Our hearts and hugs go out to you! ~ Jodi NFED, Director, Marketing and Communications
I would love to know more about your liquid cap quick weave as well.
Send me your email I will send a video of me getting it done. Ms.reesie22@gmail.com
I would love the video and to learn more as well. Is it an appropriate thing for a child to have done? I’m just beginning to look at options for my daughter for the future,once she starts asking for hair!
You are beautiful and inspiring! Thank you for sharing your story.
We agree! ~ Jodi, NFED, Director, Marketing and Communications
Woohoo!!!! Here’s to you!! Thanks for getting your story out there. It will be such a huge help to so many going through similar challenges. Also, really nice job presenting the details with the right amount of personal vulnerability and yet clear and concise. As an adult man who has been living with ED my whole life I can say that I am inspired, encouraged and want to send an enormous shout to you! Rock on!!! : )
Thank you it was definitely hard uncovering me entirely but I knew in my heart that I needed to share my story.
Hi Nicole, I am so glad that I came across your story. I to have the same condition as you. I have been searching for someone close to my age that is experiencing the same thing as me. I hope that we can connect on a personal level. I am not sure if we can exchange our contact information on here. As the doctors would tell me that my condition is extremely rare and mild. Now one in my family has it even though they say its genetic. They told me its started with me and ended with me. I have a boy and a girl and they don’t have it. I hope we can connect with each other and are able to support one another. I would like to connect with you. Thank you for sharing Nicole.
Hi, Tina. I can see your email address on the backend. If you give me permission, I can share that with Nicole via email so that you two don’t have to list your contact information publicly on this web page. Let me know if that is helpful to you. ~ Jodi, NFED, Director, Marketing and Communications
Sure here’s my email we can exchange information there. Ms.reesie22@gmail.com
Hi Tina I would love to get in contact with you. I think it would be great to connect with someone with ED as well.