Hallermann-streiff Syndrome

Shadowlinex

<div class="IPBDescription">A little more personal then you think!</div> I found out about a Syndrome so rare that there is only around 100 cases in the world. I got into this because it was an assignment for bio last semiester. Surprisingly I found almost nothing on the Syndrome accept its name, "Hallermann-Streiff Syndrome.

Now on a more personal level, I myself have this rare syndrome that happens for almost no reason at all. Luckly, I have a minor case of this because i didn't die at the age of 2 like expected. I never liked photographs of my face because of this. I mean, i have barely no hair on my forehead. Everthing about my face makes me depressed, reading expressions really gives me a sad feeling. I wonder and ask god why me? I am only the 89 case in the entire world! I thank god for giving me friends and stuff, but it still hurts. My question to you (if there are any Dr. out there wondering in NS) (prob not) if you would know more about this and can tell me anything.

(This isn't ment to be spam or a lie. ITS TURE!!! EXTREMLY. this isn't ment to be "feel bad for me thread ether, but if you happen to know something i don't TELL ME)

Transmission

<a href='http://www.google.ca/search?q=Hallermann-Streiff+Syndrome&ie=UTF-8&oe=UTF-8&hl=en&btnG=Google+Search&meta=' target='_blank'>Hmm?</a>

What are you looking for?

Last

you're afraid of what you look like? it's more common then you think. maybe the specific syndrome you're referring to is rare, but millions of people are not satisified with their looks and some become insanely obsessed with it. I have some trouble looking in the mirror myself and I'm really photogenic, but i'm not really too obsessive about it.

my advice to you is to see a professional. there's gonna be other well wishers who will reply to this thread that will tell you to just accept yourself. speaking from experience -- that's not really as easy as it sounds. talk to a counselor at school or someone you feel close to and think will give you positive advice or encouragement.

gl <!--emo&;)--><img src='http://www.unknownworlds.com/forums/html/emoticons/wink.gif' border='0' style='vertical-align:middle' alt='wink.gif'><!--endemo-->

Shadowlinex

No no no its not like that, i'm not depressed all around, but more intrested in the syndrome. I feel i'm perectly fine about my looks as long as my mind doesn't go by the wayside i really don't care. I'm more intrested in how the syndrome works. Like what gene its on, i know its not treatable, but if i will be passed down if i ever have kids. What Trans said is what i'm looking for. The fact i'm 89 in the world is special in its own way. Only one in Colorado with this.

*EDIT*
As an addiction i find that this helps my imagiantion and artistic value.

CForrester

<!--QuoteBegin--></span><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin-->Hallermann-Streiff syndrome is a rare genetic disorder that is primarily characterized by distinctive malformations of the skull and facial (craniofacial) region; sparse hair (hypotrichosis); eye (ocular) abnormalities; dental defects; degenerative skin changes (atrophy), particularly in the scalp and nasal regions; and/or short stature (i.e., dwarfism). Characteristic craniofacial features include a short, broad head (brachycephaly) with an unusually prominent forehead and/or sides of the skull (frontal and/or parietal bossing); a small, underdeveloped lower jaw (hypoplastic mandible); a narrow, highly arched roof of the mouth (palate); and a thin, pinched, tapering nose. Many affected individuals also have clouding of the lenses of the eyes at birth (congenital cataracts); unusually small eyes (microphthalmia); and/or other ocular abnormalities. Dental defects may include the presence of certain teeth at birth (natal teeth) and absence (hypodontia or partial adontia), malformation, and/or improper alignment of teeth. In almost all cases, Hallermann-Streiff syndrome has appeared to occur randomly for unknown reasons (sporadically) and may be the result of a new change to genetic material (mutation).<!--QuoteEnd--></td></tr></table><span class='postcolor'><!--QuoteEEnd-->

Taken from: <a href='http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid=nord498' target='_blank'>Health Library - Hallermann Streiff syndrome</a>

pants

If there is less than 100 cases in the world, I doubt it is passed down in genes.

Swiftspear

All the definitive books and articles that document this syndrome are in french <!--emo&:(--><img src='http://www.unknownworlds.com/forums/html/emoticons/sad.gif' border='0' style='vertical-align:middle' alt='sad.gif'><!--endemo--> , heres a short bibliography from some medical website

<!--QuoteBegin--></span><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin-->C. Audry:
Vari?t? singuli?re d?alop?cie congenitale. Alop?cie suturale.
Annales de dermatologie et de syphilographie, Paris, 1893, 4: 899-900.


W. Hallermann:
Vogelgesicht und Cataracta congenita.
Klinische Monatsbl?tter f?r Augenheilkunde, Stuttgart, 1948, 113: 315-318.


E. B. Streiff:
Dysmorphie mandibulo-faciale (t?te d?oiseau) et alterations oculaires.
Ophthalmologica, Basel, 1950, 120: 79-83.


O. Ullrich & H. Fremery-Dohna:
Dyskephalie mit Cataracta congenita und Hypotrichose als typischer Merkmalskomplex.
Ophtalmologica, Basel, 1953, 125: 73-90; 144-154.


J. Fran?ois:
Un nouveau syndrome: dysc?phalie avec t?te d?oiseau et anomalies dentaires, nanisme, hypotrichose, atrophie cutan?e, microphtalmie, et cataracte cong?nitale.
Bulletin de la Soci?t? belge d'ophtalmologie, 1957, 117: 569-597.

A new syndrome: dyscephalia with bird face and dental anomalies, nanism, hypotrichosis, cutaneous atrophy, microphthalmia and congenital cataract.
Archives of ophthalmology, Chicago, 1958, 60: 842.

Fran?ois? dyscephalic syndrome.
Birth Defects Original Article Series, New York, 1982, 18(6): 595-619.

Fran?ois' dyscephalic syndrome. Rev Ophtalmol 7: 13, 1983.<!--QuoteEnd--></td></tr></table><span class='postcolor'><!--QuoteEEnd-->

here are some alternitve names for the syndrome if you want to do more extensive searches

<!--QuoteBegin--></span><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin-->Also known as:
Audry?s syndrome I
Hallermann?s syndrome
Fran?ois' syndrome
Hallermann-Streiff syndrome
Ullrich and Fremerey=Dohna syndrome
Fremerey=Dohna syndrome
Fran?ois syndrome II
<!--QuoteEnd--></td></tr></table><span class='postcolor'><!--QuoteEEnd-->

The three main guys who are responsible for the documentation of this desiese are Wilhelm Hallermann, Enrico Bernardo Streiff, and Jules Fran?ois, as well as several other more minor contributors.

I'd say your best bet would be to contact one of the existing support foundations, or a geneticist who has worked with this disorder. From what I can find online, I would expect the news you get to be more positve than negitive, as I really doubt that such a rare genetic disorder could be the dominate gean that would be passed on. Either way, get back to me if I was able to help at all, I too am now interested in said disorder.

Last

<!--QuoteBegin--Shadowlinex+Jan 13 2004, 09:51 PM--></span><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> (Shadowlinex @ Jan 13 2004, 09:51 PM)</td></tr><tr><td id='QUOTE'><!--QuoteEBegin--> No no no its not like that, i'm not depressed all around, but more intrested in the syndrome. I feel i'm perectly fine about my looks as long as my mind doesn't go by the wayside i really don't care. I'm more intrested in how the syndrome works. Like what gene its on, i know its not treatable, but if i will be passed down if i ever have kids. What Trans said is what i'm looking for. The fact i'm 89 in the world is special in its own way. Only one in Colorado with this.

*EDIT*
As an addiction i find that this helps my imagiantion and artistic value. <!--QuoteEnd--> </td></tr></table><span class='postcolor'> <!--QuoteEEnd-->
well ... you're unique.

i wish i had some odd syndrome to make me feel so special <!--emo&:)--><img src='http://www.unknownworlds.com/forums/html/emoticons/smile.gif' border='0' style='vertical-align:middle' alt='smile.gif'><!--endemo-->.

chis1

I dont think you should thank god, just thank yourself for staying strong enough through it not to have a mental break down <!--emo&:p--><img src='http://www.unknownworlds.com/forums/html/emoticons/tounge.gif' border='0' style='vertical-align:middle' alt='tounge.gif'><!--endemo-->

Its everyones own thinking that gets them through, not god

Swiftspear

<!--QuoteBegin--></span><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin--> I dont think you should thank god, just thank yourself for staying strong enough through it not to have a mental break down

Its everyones own thinking that gets them through, not god <!--QuoteEnd--></td></tr></table><span class='postcolor'><!--QuoteEEnd-->
Can we keep this discussion out of the realm of religios argument please. He's asking for information, not theology, ok? I don't really mind arguing about it but this is hardly the time or place.