I am 25 and I have ectodermal dysplasia. its a condition where a person is born with mouth, skin and hair deformities. luckily I only have a problem with my teeth. Unfortunatly all of my teeth are baby teeth. yep thats right, I have no adult teeth. if I lose my teeth I dont grow permanant ones in thier place. the teeth I have right now are the same ones I had at age 2. does anyone know of any dentists who are looking to use somone as a guinea pig or practice for implants or other elective (but in my case very necesarry) procedures
I have dental implants and I too have a dental birth condition. Mine however is where I had too many teeth. Between the baby teeth and permanent teeth there are tons of extra teeth. More like bone things made out of tooth material. My conditon is called cleidocranial dysplasia.
I have dental implants and the poster before me whether a nurse or not has no clue what those of us who have never had a beautiful smile feels.
Getting implants isn't a horrible procedure either. In fact not bad at all. Lengthy? After never having a beautiful smile 5 months to me wasn't lengthy but so very worth it.
As to who to tell you to call? Maybe a dental university. They study people with different conditions. My prosthodontists have treated people with your condition as well. I will give you a link to someone who has your condition and you can see what they did for them. Feel free to send me an e-mail. (+ info
The ectodermal dysplasias (EDs) is a large, heterogeneous group of inherited disorders due to primary defects in the development. The tissues primarily involved are the skin, hair, nails, eccrine glands, and teeth.
The ectodermal dysplasias are congenital, diffuse, and nonprogressive.
To date, more than 192 distinct disorders have been described. The most common ectodermal dysplasias are X-linked recessive hypohidrotic ectodermal dysplasia (Christ-Siemens-Touraine syndrome) and hidrotic ectodermal dysplasia (Clouston syndrome).
The frequency of the different ectodermal dysplasias in a given population is highly variable. The prevalence of hypohidrotic ectodermal dysplasia, the most common variant, is estimated to be 1 case per 100,000 births.
Beyond early childhood, life expectancy ranges from normal to slightly reduced (+ info
I need to find pictures for a presentation on hypohidrotic ectodermal dysplasia?
Did you check "Google Images"? It seems to always work for me! I have to do quite a few presentations in school and have never had a problem getting any image! Good Luck! (+ info
Does any one have ectodermal dysplasia who's also needed a tracheostomy who can answer my questions?
My 6yr. old is needing a tracheostomy placed (possibly) but we are not sure as to how the skin reacts to foriegn objects and how well it heals. She is also immune deficient so we know there are great risks to consider.
My enscapulatoryness tells me to gontroginately answer your melmikdorifinly asked question. (+ info
has anybody had a pelvic osteotomy? i have had hip dysplasia for 2 1/2 years the pain is constant now.?
how long is recovery for this procedure? it is really hard for me to go to work everyday with this, i just want the pain gone. i have put on alot of weight because of this. help
Gaining weight is probably a big cause of the pain. Our joints do not like to tolerate extra weight when they already hurt. I have this problem too.
I had to Google this to know exactly what it is. Age seems to determine at lot of the success with the surgery. The younger a person is the more successful the surgery.
Good Luck. (+ info
Does any one have Ectodermal Dysplasia?
It is a genetic disorder that affects hair, teeth, nails and your ability to sweat. My sisters, mother, son and I all have it.
Anyone need someone to talk to?
I may not have all the answers but it helps to know there is someone else out there in the same boat.
Thanks Micael E; however to clarify, I am speaking of a genetic disorder not a cancer...there is no cure for this disorder...yet. It is caused by a genteic mutation or passed on through the x chromosome.
My daughter was born with this condition and I had never deen or heard of it before. She is now 6 yrs. old. Not only does she have absence of hair, eye lashes, eye brows ect., nails are deformed, teeth missing enamel and pointy, hearing loss, gluacoma, and immune deficiant, but she is now faced with reaccurrent lung problems. We think this is due to the immune problem but the docs are wanting to place a tracheostomy. The problem we are facing now is we are not sure how the skin is going to react to the foreign object and if it will heal correctly around the tube. Would you know any body facing this problem? I guess I could post this question :) (+ info
Hypohidrotic ectodermal dysplasia?
Does anyone know when hypohidrotic ectodermal dysplasia was discovered? please include your resources. Thank you!!!
Anna - X-linked anhidrotic (hypohidrotic) ectodermal dysplasia (EDA; MIM 305100) is one of the more common types of over 150 clinically distinct hereditary ectodermal dysplasias. It is characterized by sparse hair, abnormal or missing teeth, and an inability to sweat due to the lack of sweat glands (Freire-Maia & Piñeiro 1994).
Ferguson, BM, Thomas, NST, Munoz, F, Morgan, D, Clake, A, Zonana, J: Scarcity of mutations detected in families with X linked hypohidrotic ectodermal dysplasia: diagnostic implications. J Med Genet 1998 35: 112–115, | PubMed | ISI | ChemPort |
Freire-Maia, N, Piñeiro, M: Ectodermal dysplasias: a clinical classification and a causal review. Am J Med Genet 1994 53: 153–162, | PubMed | ISI | ChemPort |
Kere, J, Srivastava, AK, Montonen, O: et al: X-linked anhidrotic (hypohidrotic) ectodermal dysplasia is caused by mutation in a novel transmembrane protein. Nature Genet 1996 13: 409–416, | Article | (+ info
Urgent: Who first discovered Ectodermal Dysplasia?
Um, can u give me some detailed answers this is for a presentation? And also, i need some web sources or you need to tell me where you got it from. Thank you!
OK yes obviously it was by thurman, then Charles Darwin, the this weech character. but I really need to know what these guy's first names are and i need it now! not to be impolite but i need this done!
The ectodermal dysplasias (EDs) comprise a large, heterogeneous group of inherited disorders that are defined by primary defects in the development of 2 or more tissues derived from embryonic ectoderm. The tissues primarily involved are the skin, hair, nails, eccrine glands, and teeth. Although Thurman published the first report of a patient with ED in 1848, the term ectodermal dysplasia was not coined until 1929 by Weech. (+ info
I had the lasering of the cervex yesterday for cervical dysplasia cin 1- 2 hope it worked did it work for you?
I had severe dysplasia when I was 17. I had the Leep procedure done and haven't had any problems since. I am now 30. Good luck (+ info
Can mild dysplasia really go away on its own?
I am 24 years old and 6 months ago I had an abnormal pap smear. I went back in the next week for a second pap and this too came back abnormal. After this I had a biopsy and coloscopy and they discovered I have mild dysplasia cause by HPV. Well on a scale of 1-10 ( 1 being nothing and 10 being cancer, I was a 3). My gyno said that because I was so young I would probably fight it own my own. I just went back yesterday (6 months later) for another pap to see if it went away, is the same or is worse. I won't hear for 2 weeks the results. And I am panicking. All I can think about is that in the 6 months it go severly worse.
Has anyone actually had mild dysplasia clear up on its own?
I have. I have high-risk HPV and had mild dysplasia. My first pap after colposcopy and cryotherapy came back abnormal, but no worse than before. My second pap was normal. I have my third one since cryo in about a week and I'm hopeful. It would be really unlikely for it to go from mild to very severe in only 6 months...In relative terms dysplasia is slow-moving. Relax. I know waiting sucks but you're staying as on top of the situation as you can. (+ info
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