Ectodermal Dysplasia

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Ectodermal Dysplasia
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    So.. I haven't gone to the dentist since I was 15 dut to severe trauma. I'm now 24. Teeth problems run in my close family very rapidly.. I think its called ectodermal dysplasia.. anyhow, I had one of my front teeth pulled out today, they replaced it using a marilynn bridge. They were so excited cause it was the first time they tried a marilynn bridge in the way they did with me... and.. low and behold, I managed to easily snap it off within a day.... I know I have to call them even. Sooner now.. and they will probably love to hook a chain to the adult tooth that has come in next to my nose.. I just.. doing this appointment even with xanax was incredibly difficult... and I don't know how all this later work is going to go... I have to do it.. but.. its making my confidence hurt alot.. not just cause of a missing front tooth and soon to come braces on the front but I am mostly embarrassed because I can't even go a day without crying over it for the past two weeks... its ridiculous.. and I know its to much... so I don't turn to anyone for comfort.. If I do, they've been hearing it so its not very genuine or empathetic or sympathetic conversation.... I don't know where to turn... I don't want to talk to and won't talk to another guy for comfort, im married, I just need some though... and my husband's really had enough of my dentist talk... just been quiet or short with me about it... I wonder how long of dentist work its going to take for this anxiety to wear down.... anyone else?

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    TLC's 'Two In A Million' Pairs People With Rare Diseases and Disorders

    TLC’s new series “Two in a Million” premiered on Wednesday — a show that pairs people who share a rare condition. In each episode, two people with “some of the world’s most unusual disorders” spend a week together “sharing hardships and incredible triumphs, visiting world-renowned doctors and finding answers to important questions,” according to a press release. In its first episode, Gioavanni, 7, (who we’ve written about on The Mighty before), and Owen, 9, meet. The boys both have Schwartz-Jampel syndrome, a rare genetic disorder characterized by abnormalities of the skeletal muscles, abnormal bone development, permanent bending or extension of certain joints in a fixed position, and/or growth delays resulting in short stature, according to the National Organization for Rare Disorders (NORD). Former Raw TV intern Jonna McIver came up with the show after filming a student documentary on Owen. “When we saw (the film) in the office, it made us all cry,” Adam Hawkins, senior vice president of development at Raw, told CNN. “We realized that it explored ideas about loneliness and isolation that we then worked up into a bigger series idea. We wondered, what if Owen had ever met anyone else with the same condition — and what it would be like if he did.” Thanks for joining us for #TwoInAMillion last night, we hope you enjoyed the story. Here's more information on Owen & Giovanni's disease, Scwartz Jampel Syndrome (and some adorable photos from last night's ep)Posted by TLC on Thursday, April 7, 2016  This season's six episodes will also feature people with ectodermal dysplasia, an inherited multisystem disorder that typically affects the hair, teeth, nails, sweat glands and/or skin; lamellar ichthyosis, a genetic skin disorder; osteogenesis imperfecta, a group of disorders affecting the connective tissue and characterized by fragile bones; Jarcho-Levin syndrome, a genetic disorder characterized by distinctive malformations of bones of the vertebrae and ribs; and Goldenhar syndrome, a disorder that involves malformations of the eyes, ears and spine. 

    Woman Sheds Clothes to Prove No Obstacle Has Taken Away Her Beauty

    Melanie Gaydos knows beauty is a state of being. In the video below, the young model proves that and more when she undresses while discussing her struggles as part of The What’s Underneath Project. Gaydos has ectodermal dysplasia, inherited disorders that affect hair, nails, sweat glands and teeth. She’s also lived through an alcoholic family, abuse and depression. But today, she can step in front of a camera and find strength in what she’s overcome. “A lot of people judge me; they think I’m pretty f**king weird,” Gaydos wrote on Stylelikeu’s website. “I have thought how I would be if I was born without a cleft palate and with a full head of hair, and I think I would be really boring. Even though I’ve been through a lot, they’re my experiences, and I like where everything has brought me today.” Watch her full interview below: Meet another Mighty participant in The What’s Underneath Project here. Live Mighty. Like us on Facebook .

    Shaq's Ignorant Instagram Blunder Reminds Us Never to Judge Disability

    “I’m more positive probably than I could ever be,” Jahmel Binion says in the FOX 2 video below, just days after basketball legend Shaquille O’Neal publicly mocked him on Instagram. Binion, a 23-year-old from Madison Heights, Mich., has ectodermal dysplasia, a rare genetic condition with symptoms like “reduced ability to sweat, missing teeth and fine sparse hair.” Instead of lashing out against O’Neal, he responded with an anti-bullying Facebook page, “HUG DON’T JUDGE,” which gained more than 18,000 followers in less than a week. “Please be respectful, be positive and share this with the world,” he writes on the page. “Time to make a difference.” O’Neal deleted the photograph from Instagram and apologized for his ignorance on Twitter with a hashtag that stood out to us at The Mighty. Hopefully, O’Neal’s ignorance and #AlwaysLearning apology will be a reminder to others to educate themselves before making a snap judgment about someone’s appearance. The National Foundation for Ectodermal Dysplasia has invited O’Neal to this year’s NFED National Family Conference in hopes of doing just that. In the mean time, Binion is fighting hate with kindness. You can join his HUGS DON’T JUDGE Facebook group here.