Ectodermal Dysplasia

Question: ectodermal dysplasia? 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

Answer: 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.

Question: I need to find pictures for a presentation on hypohidrotic ectodermal dysplasia?

Answer: 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!

Question: Should Hypohidrotic Ectodermal Dysplasia (HED) Be Declared A Disability Underneath The ADA? Anhidrotic Ectodermal Dysplasia also known as Hypohidrotic Ectodermal Dysplasia (HED) is an Ectodermal Dysplasia Syndrome (EDS). Ectodermal Dysplasia (ED) is a rare genetic syndrome. If a person has HED, then the person has partial or complete absence of certain sweat glands. People with HED do have lack of sweating or diminished sweating. People with HED also have heat intolerance. These are some of the things that are associated with HED. People with HED need to drink cold liquids, spray water on their bodies, use fans, use air conditioners, and rest on hot days when working or playing. By doing all of these things, it helps regulates a HED person's temperature. A person with HED need to have certain accommodations. Examples: 1. A person with HED should not have to stand in a long line on a hot summer day due to not having the natural ability to regulate their body temperature through sweating. 2. A person with HED needs to take breaks in order to cool them-self off. 3. A child with HED needs to take a water bottle or other cooling device on the school bus to help regulate their body temperature. A child with HED could be denied entrance to a child care center due to fact that the child care center has the lack of individualized care available to take care of the child's HED needs. I know about a case that some persons with HED were forced to stand in a long line on a hot summer day and these same people with HED are unable to tolerate the summer heat. I personally know and have met various people who have HED when I have attended NFED national family conferences. National Foundation for Ectodermal Dysplasias (NFED) http://www.nfed.org/ Currently, HED is NOT considered to be a Disability underneath the Americans with Disabilities Act (ADA) and is denied protection underneath the ADA. The Ectodermal Dysplasia Community would like to see HED to be declared a Disability underneath the Americans with Disabilities Act (ADA). I am being extremely blunt when I say this but I AM extremely biased when it comes to the Ectodermal Dysplasia Community due to the fact that both me and my late mother DO have a rare Ectodermal Dysplasia Syndrome (EDS). There are approximately 150 Ectodermal Dysplasia Syndromes. I DO support the Ectodermal Dysplasia Community 100%. I DO support the Ectodermal Dysplasia Community 100% in trying to get HED to be declared a Disability underneath the Americans with Disabilities Act (ADA). My questions are these: 1. Should Hypohidrotic Ectodermal Dysplasia (HED) [also known as Anhidrotic Ectodermal Dysplasia] be declared a Disability underneath the Americans with Disabilities Act (ADA)? 2. Why or why not? I am interested in other people's answers giving me their opinions on should Hypohidrotic Ectodermal Dysplasia (HED) [also known as Anhidrotic Ectodermal Dysplasia] be declared a Disability underneath the Americans with Disabilities Act (ADA) or not. Thank you. In January 2009, the United States Court Of Appeals for the Fifth Circut made the ruling that Hypohidrotic Ectodermal Dysplasia (HED) [also known as Anhidrotic Ectodermal Dysplasia] is NOT a Disability underneath the ADA. The ruliing was made in the EEOC vs Agro Distribution, LLC. I visited both weblinks and read everything on both webpages. You have to admit that the EEOC tried to make use of the ADA when they filed the lawsuit against Agro Distribution, LLC. Distribution. How I found out about the case was through the newsletter that NFED puts out every three months. To accommodate a person with HED varies. Lotion or vasoline have to be put on a person's skin due to having thin, dry and soft skin. A person could run a fever due to being over-heated. A person might wear a wig due to having sparse thin hair. A person usually wear dentures due to having missing and malformed teeth. In many cases, a person has underdevelopment or no mucous glands within the respiratory tract and the digestive tract. Some persons have decreased function of the immune system which can make a person to have an increased susceptibility to certain infections and/or allergic conditions. Many persons also experience recurrent attacks of wheezing and breathlessness, respiratory infections; chronic inflammation of the nasal passages; scaling, itchy skin rashes and/or other conditions. If a person had some or all of these problems that are mentioned in my post, you can see what steps needs to be taken to accommodate person with HED.

Answer: YA wouldn't let me finish--so i am using a second screen anme They didn't say that its not a disability--they said tehy didn't decide if its a disability or not since teh case didn't reach that stage--had it proceded-evidence would need to be presented to decide We assume for summary judgment purposes that Velez has anhidrotic ectodermal dysplasia and that he cannot perspire at all. This medical syndrome is unusual. Had there been a genuine issue of fact on relevant ADA issues, it would have been necessary at trial for EEOC to establish the nature and extent of Velez’s condition through admissible medical evidence. Fed. R. Evid. 701. No such evidence was presented. the sumamry judgement was based on the fact that he was not actaully denied accommodations--he had done simialr work before in hotter weather---and he was never told he coudln't take breaks this paragraph exists onpage 1: The EEOC appeals this dismissal and award. Because Velez is not disabled within the meaning of the ADA, Agro did not refuse to provide reasonable accommodation, and this suit lacked foundation following Velez’s deposition, but it is nonsensical--especailly when they put the footnote taht it was not determined if it was an ADA condition ....and if tehy provided accommodations or not---wouldn't be relevant if he disbn't have an ADA disability

Question: 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.

Answer: A small hole is cut into both the skin in the neck and the trachea itself for the tracheotomy placement. A plastic trach tube will be inserted in the new hole and your daughter will breath through that hole, not her mouth and nose. The skin will heal around the plastic tube and she will form a stoma. One of the biggest reactions to the trach is increased mucus production, which will be sucked out using a small catheter. It does introduce a new way for bacteria to enter her body and is often a major source for infection. There is a lot to consider about elective trach placement, and the biggest one to ask the doctors about is why is the trach necessary and how long do they expect it to be in place? Is she having trouble breathing or maintaining her airway?The stoma, or hole, will heal with time, most people take anywhere from 2 weeks to 6 months for it to close. Good Luck!!!

Question: Hypohidrotic ectodermal dysplasia? Does anyone know when hypohidrotic ectodermal dysplasia was discovered? please include your resources. Thank you!!!

Answer: 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 |

Question: 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.

Answer: Hi 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 :)

Question: 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!

Answer: 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.

Question: my daughter and grand daughter have Ectodermal DYSPLASIA .We need a Dentist in the Torrance Ca,90503 area .? One that's knows about ED. help

Answer: Yep... 1-800-dentist... their ONLINE website can help, too. Have a healthy day.

Question: I have dry hands, is it an allergic reaction? I'm not sure if this is a reaction to something or not. I normally put lotion on my hands once every three days or so, and they're not that dry. Today, 20 minutes after putting on lotion or 10 minutes after washing my hands they begin peeling. It looks like all the skin on the underside could be peeled off. It's getting worse as the day goes along . Could this be an allergic reaction to something? If so, would Benadryl stop it? Also I have ectodermal dysplasia, dry skin goes with it, but mine has never been like this before. Help? I need to do something. Ok. They are itching, when they get very dry, that's why I've been adding lotion so much.

Answer: Yes they are an allergic reaction try using aveeno

Question: What are some dieses that are specific to a Nationality? For example. ectodermal dysplasia - is exclusive to Norweigans Is tehre any other desieses you know of that are specific to a certain group of ppl . And i dont mean gay ppl with aids Thnx for you help

Answer: I do not believe there are any strictly related to nationality, but to regional adaptation. Thus many similar people will have similar problems. Nationality is based on politics. Isolated evolution is based on survival traits some of which have diseases associated. For example the Native American lack of immunities to European ills. However, in Papua New Guinea the Fore tribe has rampant Kuru disease but that is due to a cultural tradition of their cannibalistic funeral practices.