My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique.
For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work, whereas I had more difficulties with hearing and other skin issues. My father was adopted, so discovering this syndrome was a challenge back in the late 60s-early 70s.
When my mother and father discovered I was affected way back in 1991, my father reached out to his biological mother. When doing so, he found more answers that became helpful in determining what to expect.
I can empathize and sympathize with anyone/everyone going through the surgeries and the troubles that come along with being affected by ectodermal dysplasia.
With that said, I know most parents would agree that it’s also hard watching an individual go through some of the procedures. With caring health professionals and a supportive family, anyone can make it through and have a wonderful life no matter the circumstances.
I’d honestly love to hear back from others out there. I’ve personally never heard from anyone or met anyone else that has this in common. Please, ask me questions and don’t be afraid to contact me by commenting below.
You may be interested in:
- 15 Reasons to Attend Family Conference
- Pen Pals Across the Pond!
- Why I volunteer for NFED! My Son and others like him!
Share Your Story
Hi, my name is Terri and I was born with EEC one of the forms of Ectodermal Dysphasia. I was born with bilateral cleft lip and palate, some skin problems,eye problems,not all my sweat glands and so on. So glad to meet you!
Hi, my name is Heidi. I have Ectodermal Dysplasia as well but have never been formally diagnosed with what type. I too have similar problems – born with bilateral clef lip and palate, extensive dental issues, skin issues, etc. I am glad we have this opportunity to meet others who share in the challenges we face. It’s good to know we’re not alone.
Hi my name is Heather Buehler. I am the proud mommy to a two year old daughter and a 10 month old son that has ectodermal Dysphasia. we are still send test to narrow which one but it os defendant that they have it. They both have the dental issues of course hos is just starting but the signs are there. They both have skin issues and neather sweat. I love readong you story. I think about how there life will be. Hoping they will meet someone in there future. I cant stand the thought of them thinking they are in this alone. Thank you for sharing your story.
When I was younger I thought the same thing…will I find people that’ll accept me? Will I find love? Although things didn’t pan out exactly how I thought they would…I was happily engaged for awhile and know that it is unrealistic to believe that there isn’t love for everyone. Everyone will find love. Outside of finding a partner in that way…all of my friends are I’ve had for literally 15 years…they were always there for me and still are. I encourage everyone to do their best in finding people who care and accept them for who they are.
Hi, I’m Courtney. I’m the first in my family with ED that we know of but have a little girl now who shares it. I have a little boy on the way am waiting to see if he too is affected by this or if he’ll get lucky. We’re mainly affected in our teeth and extremities. Not sure which form. It is a long and expensive struggle, but we can all get through this with love and support from those around us! Glad you’re opening up about your personal experience.
Hi Aaron! I have EEC, which includes skin issues, cleft lip and palate and ear problems, to name a few. I blog about it at http://www.eecchick.wordpress.com
[…] Similar, but Unique… […]
Thank you so much for the responses. This organization has simply opened my eyes and to realize none of us are alone in this. Thanks for those that have shared their story. I forgot to add that for me..schooling at a young age was probably one of the most difficult challenges. My reading comprehension was less than average and I was struggling with some speech issues. Trust me…with hard work and dedication from both teachers and family…anyone can overcome that. I’m about to graduate with an education degree. Some things just take time and work. Thanks again, I greatly appreciate this organization and what they do.
Thank you for sharing. My son is 6. Her has Coclear Implants from hearing loss and has ectodermal dysphasia. His skin is affected on his hands feet and scalp. We struggle with cuts on palms and soles. It’s very difficult for him sometimes because they hurt.
We use a bunch of creams and prescribed lotions and natural herbal oils. Do you have any advice ?
I so appreciate your help and sharing
Dana
Hi Aaron.
Hang in there buddy. As you’ll see, this becomes less of an issue with age. I had my share of challenges growing up too, but now at 50, Ectodermal Dysplasias is barely an afterthought. As cliché as it sounds, it’s what’s inside that matters most to other people.
I hope that you get a chance to meet Joe Barone. He’s in his 90’s now, and I think several of his family members were affected. He taught me a lot about how all of this fits into the grand scheme of things.
Just remember that the NFED is a fantastic organization full of great people, who are there for each other when you need them. Don’t ever hesitate to reach out.
Thanks for sharing!
John
Hi Aron I am Jon Stevenson. I have Clouston’s Syndrome, one of the many forms of ED. . Many members. of my family had Clouston’s. My father. My cousin’s my Aunt and uncle. My grandmother and her father. We don’t have problems controlling body temp or dental problems but we have sparse hair and convex finger nails and some skin issues. Don’t feel alone. There are many people with Ectodermal Dysplasia
Our granddaughter, Kahlei, has HED. She will be seven this year, but only has nine teeth. She is also unable to sweat, so it is really hard on her during the Summer in Texas. She knows that she is different, but she really hasn’t figured out just how rare her condition is. I have seen several people on the NFED website who also have this condition, and several of them have been very happy to help answer questions. I hope you find others that you can connect with so you can have a support group to help you.