Finding EEC Syndrome

1A

 

My hands and feet are odd. Both effected by Ectrodactyly. But my body is different as well. From my straw like hair, burning eyes with dark circles beneath, blotchy skin, small ears, delayed hearing, see through teeth, sweat glands, underdeveloped chest, and nails that either split or curve growing back into my skin.

 

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Medical issues and dental fights have plagued my life. For all I have ever known Ectrodactyly was the cause of my genetic mutations. In my 36 years on planet earth not one primary physicians have ever been able to tell me otherwise. It’s all been either a guess or a gamble. Local doctors have had no idea. Dentists cared less. As long as each were getting their payments in full either from insurance, credit or straight out-of-pocket, everything was wonderful. For them.

My non stop medical emergencies and countless dental repairs left me physically and financial devastated. Credit debt. Deep depression. Shame. Embarrassed, I never told my own family half of what I’ve been through just to survive. To stay afloat.  I withdrew from everyone and everything I loved. For a three-year period I went without physical contact from another human being.

I first became aware of Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate or EEC syndrome in 2010. I thought in name alone I was not a member of the this rare disease’s group. I did not have either a cleft lip nor palate. The medical definitions for Ectodermal Dysplasia overloaded already anxiety ridden brain. What I did understand was Ectodermal Dysplasia began before birth as a layer of cells form over the body.

 

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In 2015 I began a battle to return my ability to chew, after losing all my lower molars. I started a GoFundMe Page. I wrote and posted my dental horror story on social media and through that cry for help discovered a EEC syndrome community. The EEC Syndrome community lead me to NFED an organization with vast sources of information for those either just diagnosed or learning about Ectodermal Dysplasia for themselves or loved ones. They not only provide you with research but can actually help in locating medical and dental professionals with knowledge and experience with of Ectodermal Dysplasia.

I now know I have the both E’s in EEC Syndrome. Ectodermal Dysplasia and Ectrodactyly. These mutations of my gene’s contribute to my issues with my teeth, hair, eyes, skin, sweat glans, nails, ears, nipples and hearing. The genetic disorder Ectodermal Dysplasia may mean for most entering a world that can rob one of either worth or wealth and moreover both. If knowledge of Ectrodactyly-Ectodermal Dysplasia-Cleft/Lip Palate spread to the insurance companies, doctors, dentists and the public lives like ours who live with EEC Syndrome would change for the positive.

Now that I do know I live with EEC Syndrome my mind is once again drowning with facts, figures, statistics. But I am learning. There is a lot of research on EEC Syndrome to enlighten those with a thirst to comprehend. More is being learned everyday. Understanding is key to helping combat against prejudice, misunderstanding, harsh uneducated judgments and unjust insurance denials.

Knowledge is power.

Learning is hope.

Searching for the path to health.

 

BabyB

 

 

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