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#6114 - 10/25/06 08:18 PM ecoderma dyspalcia
Anonymous
Unregistered


ok, i may have totally spelled that wrong..lol Vanessa went to the Derm to day and he says he wants her to go to genetic testing because she doesnt sweat. I thought having ichthyosis means u cant sweat for the most part. He seems to think this other condition also causes no sweating. Nessa was never diagnosed with certain kind of Ichthyosis but they think its CIE. He just wants more answers and think this visit may help. Does anyone know about the condition called ecoderma dyspalcia( and again it probably is spelled wrong..sorry.. i have to get correct spellin)

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#6115 - 10/25/06 09:29 PM Re: ecoderma dyspalcia
tiaamber Offline
Member

Registered: 07/15/06
Posts: 6
Loc: charleston, sc, usa
I think it might be spelled ectodermal dysplasia. Here is a link to the website. www.nfed.org

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#6116 - 10/26/06 12:58 AM Re: ecoderma dyspalcia
Anonymous
Unregistered


THANKS GUYS, I think she honestly doesnt sweat because of the Ichthyosis..i read that link and Nessa doesnt have any of those other symptoms to the ectodermal dyspalcia. I dont know why he would want her to get tested for that. She has great hair , teeth and has all her limbs. The only thing that looked simular is the respitory problems. She does have asthma. Well I guess it wont hurt to go and see. thanks again

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#6117 - 10/30/06 06:45 PM Re: ecoderma dyspalcia
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Just for FYI- I read an article today that I came across on Google that said that some children who have ectodermal dysplasia are born with collodion membrane...??? Never heard that before...

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#6118 - 10/30/06 07:25 PM Re: ecoderma dyspalcia
Ellamay Offline
Member

Registered: 10/23/06
Posts: 34
Loc: Bagshot, Surrey, England, Uk
Quote:
Originally posted by jamie bowman:
ok, i may have totally spelled that wrong..lol Vanessa went to the Derm to day and he says he wants her to go to genetic testing because she doesnt sweat. I thought having ichthyosis means u cant sweat for the most part. He seems to think this other condition also causes no sweating. Nessa was never diagnosed with certain kind of Ichthyosis but they think its CIE. He just wants more answers and think this visit may help. Does anyone know about the condition called ecoderma dyspalcia( and again it probably is spelled wrong..sorry.. i have to get correct spellin)


Hi Jamie

Ellamay too has this problem of not sweating and too has a probable diagnosis of NB-CIE and also was born with a colodian membrane wich as far as I know is the first sign of this type of ichthyosis!

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#6119 - 10/30/06 07:56 PM Re: ecoderma dyspalcia
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Just FYI- I read an article today that I came across on Google that said that some children with ectodermal dysplasia are born with collodion membrane- Never heard it before....hmmmm????

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#6120 - 10/30/06 08:50 PM Re: ecoderma dyspalcia
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
has Vanessa cut any teeth yet?? I'm not sure how old she is... I saw something on Discovery health channel about ectodermal dysplasia this weekend at my mother in law's.

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#6121 - 10/31/06 01:54 AM Re: ecoderma dyspalcia
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I posted about this condition before. A derm had proposed to me that this is what I may have, but my symptoms, other than a sweat disorder, do not match those of ED (I have severe Vulgaris and can sweat in the right conditions). I cut and paste FAQ from the ED website cited above. Teeth abnormality seems to be prominent. See below and see the website.


"How exactly are various parts of the body affected by ED syndromes and what treatments are available?
ED typically affects specific parts of the body in the following ways:

Hair
Individuals affected by an ED syndrome frequently have abnormalities of the hair follicles. Scalp and body hair may be thin, sparse, and very light in color, even though beard growth in affected males may be normal. The hair may be excessively brittle, curly, or even twisted. Wigs and make-up can mask defects in hair development.

Nails
Fingernails and toenails may be thick, abnormally shaped, discolored, ridged, slow-growing, or brittle. The cuticles may be prone to infections.

Skin
The skin may be lightly pigmented. In some cases, red or brown pigmentation may be present. Skin can be prone to rashes or infections and can be thick over the palms and soles. Care must be taken to prevent cracking, bleeding, and infection.

Sweat Glands
Many individuals affected by ED syndromes cannot perspire. Their sweat glands may function abnormally or may not have developed at all. Without normal sweat production, the body cannot regulate temperature properly. Therefore, overheating is a common problem, especially during hot weather. Access to cool environments is important.

Teeth
Abnormalities in the development of tooth buds usually result in missing teeth or in the growth of teeth that are peg-shaped or pointed. The enamel may also be defective. Dental treatment almost always is necessary and children may need dentures as early as two years of age. Multiple denture replacements are often needed as the child grows, and dental implants may be an option in adolescence. In other cases, teeth can be capped. Orthodontic treatment also may be necessary. Because dental treatment is complex, a multi-disciplinary approach is best.

Other Features
In some types of ED, abnormal development of parts of the eye can result in dryness of the eye, cataracts, and vision defects. Professional eye care can help minimize the effects of ED on vision. Similarly, abnormalities in the development of the ear may cause hearing problems. Respiratory infections can be more common because the normal protective secretions of the mouth and nose are not present. Precautions must be taken to limit infections.


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Is there a cure for ED?
There is no cure for ED, but many treatments are available to address the symptoms. Research is ongoing to learn more about how genes cause ED syndromes, what may be done to prevent such disorders in the future, and how to better treat those who are affected.

Because the disorders are complex, a team of doctors and dentists, rather than a sole practitioner, typically provide care for individuals affected by ED syndromes."


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How do the ED syndromes affect someone's daily life?
Emotionally, this disorder can be challenging for many individuals affected by ED syndromes. One of the purposes of the National Foundation for Ectodermal Dysplasias is to reach out to individuals and families affected by ED syndromes and help them live full, productive lives. There are thousands of successful, well-adjusted, contented people living with this disorder. The emotional pain of ectodermal dysplasia can be overcome with one's own inner resources, sound medical facts, and the support of others. Sometimes professional counseling from a psychiatrist, psychologist, or social worker is needed to develop one's self-confidence and positive self-image.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#6122 - 11/16/06 05:52 AM Re: ecoderma dyspalcia
Blitzkid196 Offline
Junior Member

Registered: 11/16/06
Posts: 1
Quote:
Originally posted by jenngist:
has Vanessa cut any teeth yet?? I'm not sure how old she is... I saw something on Discovery health channel about ectodermal dysplasia this weekend at my mother in law's.


sorry to resurrect a dead thread...
but I was doing a bit of Googling and stumbled across this forum...I was the girl that the Discovery Health Channel interviewed about the Ectodermal Dysplasia, so if anybody has any questions for me, I'd be more than willing to answer.

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#6123 - 11/16/06 04:13 PM Re: ecoderma dyspalcia
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
Hi, before my daughter was diagnosed with CIE, she was checked for ectodermal dysplasia. I had her go to a ped. dentist and had hair samples sent out. Thank goodness she did not test positive for it. Teeth I guess are a tell tale sign along with hair or lack of. I did not research it anymore because of the negative results we received. Sorry for so little info!

As for sweating, my daughter only sweats a bit on the tip of her nose and the bottoms of her feet, which brings me to......Does anyone have a problem with stinky feet? Claire's feet smell terrible!!!! Much worse than my other 2 daughters who are unaffected.

Libby

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