Get EDucated!

Hello, my name is Crystal Mata and I am affected by the rare disorder known as Ectodermal Dysplasia. For people in our community, the Month of February is Awareness Month. As a person involved in this community, I am here to spread the word about ED. With over 150 different types of Ectodermal Dysplasia, as of 1990, 7 out of every 10,000 babies are affected. Symptoms range from mild to severe. It’s very rare for the disorder to affect lifespan and learning disabilities.

“The conditions are a remarkably diverse group of disorders which may also affect other parts of the body. The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others. Therefore, Ectodermal Dysplasia may cause these parts of the body to develop abnormally.” Need not to fear, this rare disorder is NOT contagious. It’s a heritable or genetic disorder passed on to children. It is possible for a child to be the first-born with the disorder but this would only occur if there was a change in DNA or a type of genetic mutation. There are currently NO cures for any type of ED. However, there are several treatments available for some symptoms and research is on going.

I am affected by Hypohidrotic Ectodermal Dysplasia  (HED). This affects the growth of my nails, hair and teeth. My symptoms are mild and manageable. I inherited this disorder from my father, he inherited it from his mother, and she inherited it from her father. As you can see, there is a clear pattern of Father to Daughter and Mother to Son. However, neither one of my siblings are affected. I do carry the risk of a 50% chance of passing on the disorder to my children.

Every February comes and goes so quickly and spreading the word can be one of the hardest things to do. Today, all I ask from my readers is to share this article. Awareness is one of the most important ways for people to receive information. Thank you in advance from our community. For more information on this disorder, please visit www.nfed.org.

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