By Nancy Jane Johnson
I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the
middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He lives with his mom, Samantha; step-dad, Miguel; sister, Ashley; two cats, two mini dachshunds, two Reeves turtles and maybe someday soon, his own Labrador retriever puppy.
Ethan was born with pneumonia and spent the first week of his life in Maine Medical NICU in Portland, Maine and the second week in the hospital recovering.
From the time he was born and throughout his first year, family and friends noticed other unusual things about him. His teeth were different. He hated being in sunlight, and had no hair. His thyroid levels were abnormal. His tongue was tied. He had other bouts of pneumonia, was diagnosed with asthma and had no nipples.
The doctors were not sure but sent him to see pediatric dentists, endocrinologists and geneticists. It was his mom, Samantha’s good friend Heidi, who, after researching his symptoms on the internet, said she thought he had a condition called ectodermal dysplasias. She was right.
Doctors diagnosed him several months later. He has seen a geneticist but has not had a full genetic diagnosis. He is symptomatic for hypohidrotic ectodermal dysplasia (HED) but even then he has differences. He has some sweat glands but half the normal amount. He has hair but it is brittle and breaks off. Ethan had his first haircut when he was five years old and even then it was pretty much to even it out.
He has some teeth but not a normal amount and they have no enamel. When he was three years old, he was hospitalized to do root canals and crowns on all of his baby teeth. Most adults have a hard time with just one crown! Now that he is a teenager, Ethan has braces and will be getting more crowns and implants to give him teeth he can chew with and a beautiful smile. He is his dentist/orthodontist’s first patient with ectodermal dysplasia.
He is a pretty normal teenager. If you were at the Family Conference last year, you will remember him as the kid who played the viola. He has played viola for about seven years. He played soccer when he was younger, now he runs cross country and plays tennis in school.
He’s in high school and likes it much more than middle school. He had some challenges while in middle school with bullies and even some of the teachers he had could have been called bullies. Ethan coped with the bullying by contacting the school counselors, reporting it and mostly dealing with it on his own. He knows his family is there for him when he needs them.
Ethan, like other people with ectodermal dysplasias, has a lot of medical appointments. He tends to get sick easily so misses a lot of school days. Sometimes the school has sent him home because a teacher said his coughing was too disruptive to the class even though he had no fever, had seen a doctor and was on medication. The school has threatened him with filing a truancy report for missing too many school days even though they were all medical or he was sent home by the school! Thankfully, he has supportive parents.
He has never met anyone else with ectodermal dysplasia at any schools he’s attended or anyplace he’s lived. One of the biggest challenges his parents have had is finding a doctor or a dentist who actually has heard of ectodermal dysplasias.
Until he went to the NFED Family Conference, he had never met anyone else like him. He had such a great time meeting everyone and getting to know other teenagers. Ethan’s mom found the NFED online when he was still a baby. It has been a wonderful treasure of information and resources as he has grown. Now, after meeting other members at his first Family Conference, Ethan has new and hopefully lifelong friends.
(Nancy Jane Johnson is Ethan’s grandma.)
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Great article. 🙂
I get sick ALL the time and never knew it was related to my ED. I’ve never been genetically tested, but I wonder about it as someday I might need disability due to how often I’m sick.
Interesting….
Hang in there Ethan. Hope to meet you at 2017.
~Moe