Rare Disease Day was started in 2008 to raise awareness to those in society who are affected by rare diseases. (more information can be found at the official website: Here)
I wanted to take a moment to bring awareness to a rare disease my siblings and I have, as well as briefly share my story.
My seven brothers and I have some of the symptoms of the rare disease, Ectodermal Dysplasia.
Ectodermal Dysplasias are a group of over 150 heritable and or genetic disorders that affect the function and development of many different parts of the body. There is no cure for this disease, yet there are many ways to help those affected live with the defects the best way possible, like specific orthodontic and dental care.
-Teeth: Teeth may be missing, be pointy, have wide spaces, and have a higher risk for cavities because of defected teeth enamel.
-Hair: The hair development of the scalp and body can be sparse or absent.
-Nails: Defects in the formation and development of finger and toe nails.
-Sweat Glands: Some diagnosed with Ectodermal Dysplasia cannot sweat due to dysfunctional sweat glands or are missing sweat glands completely.
-Skin: Ectodermal Dysplasias can affect the skin in many ways, skin may be thin and pale, dry, scaly and easily irritated to name some.
-Other: Missing fingers or toes, cleft lip and/or palate, and hearing problems are just some of many others.
(Check out: What is Ectodermal Dysplasia? for more detailed information)
If you are interested in learning more about the different types of Ectodermal Dysplasias I highly encourage you to visit the official website of the National Foundation for Ectodermal Dysplasias Here.
My brothers and I are affected most prominently in the teeth, which includes missing numerous teeth and the teeth we do have are pointy with large spaces. In my own case, I am missing roughly 10 teeth. After six years of orthodontic and dental work, with the help of two retainers, my teeth and smile now look "normal".
When I was five years old, my parents first discovered the existence of this disease as they were exploring the options of how to help my oldest brother receive treatment for his extreme defects with his teeth. They soon realized I had it as well, and decided not to let me feel as if my defect defined me. They never mentioned to me that I had ectodermal dysplasia until I was roughly the age of 11, and even at the time, it was never treated as a terrible thing. The defects of my teeth were noticeable up until after I turned 16, however, I never thought of myself as different from other girls and I never let my disease affect how I perceived myself as a person. I knew that my smile was different and that my teeth were strange, but I didn't let it stop me from smiling. I am strongly convinced that how my parents handled the situation and raised me greatly contributed to my experience dealing with the defects of my teeth. I am deeply grateful to my parents who taught me the importance of the valuing inner beauty as I was growing up.
While growing up, living with Ectodermal Dysplasia taught me just how important it is to place inner beauty above physical, outer beauty. I learned at an early age that I felt the prettiest when my heart was happy and I could be myself regardless of how I looked on the outside. How my parents handled the situation positively contributed to my acceptance of the disease. I cannot recall a time where I was unhappy with my defects, because for as long as I could remember they were a part of who I was and am. There were times when I would worry about it, but I never wished I were different from how I am or let it affect my happiness.
I don't usually talk about my disease, and not many people who know me are aware that I have a form of Ectodermal Dysplasias. However, recently I have been feeling called to talk more about what I have learned from living with this disorder in order to help others and in particular, young girls, with the importance of inner beauty.
I would like to talk more about my journey with acceptance, inner beauty and ectodermal dysplasia in the future, so be sure to look for that soon!
Today, take a moment to learn more about rare diseases that affect those around us.
Con amore in Cristo,