FAQ - proteus syndrome
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Are there any treatments for Proteus syndrome?


I know that there are no cures out there for Proteus syndrome. Id like to know what kind of treatments are held for this disease and were they successful, unsuccessful, or pending result?
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There is no cure for Proteus syndrome, but there are treatments.

Treatment largely involves the management of effects of the disorder, such as the removal of tumors or bony overgrowths. Removal of tumors is not recommended, though, unless they are causing major problems, since these tumors usually grow back. Surgery to remove an overgrown portion of the bone should be performed only if the bony over-growth is affecting normal functioning. Bony over-growths in the ear, for example, may need to be removed if they are interfering with hearing. This type of surgery, however, can sometimes increase the growth of the remaining bone. Psychological counseling to help children with Proteus syndrome deal with the disorder should be considered. In order for counseling to be effective, it is preferable that it begins at a young age.

More info at the links.  (+ info)

What is the difference between neurofibromatosis and proteus syndrome?


Are they the same thing?
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Neurofibromatosis is a genetic disorder that can cause tumors to form anywhere on the nervous system at any time, while Proteus Syndrome is a condition which causes abnormal growth of the skin and bones- having nothing to do with the nervous system (as far as I know.) PS may cause tumors also, but most of them are benign.  (+ info)

Proteus syndrome: how was it discovered and what kinds of treatment are available for it?


I am creating a web-based research project for biology and these are two of the last topics that I need to cover. Please state a web source with a .gov, .edu, .org or any others except for.com (points taken off if a .com is used). Thanks to all those that help.
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Cedars-Sinai.edu Kumc.edu/gec/ rarediseases.org  (+ info)

How many people have Proteus Syndrome in the world?


Thank you! This is for a project.
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Internationally: Proteus syndrome is believed to be exceedingly rare, with about 100-200 individuals affected worldwide. This suggests that prevalence is less than 1 per 1,000,000 live births.  (+ info)

What is the death rate with Proteus Syndrome?


I am working on a project for school, and I'm curious.
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I'm not sure that anyone really knows.

Proteus Syndrome is a congenital disorder of skin overgrowth and atypical bone development, often accompanied by tumors on over half the body.

The clinical presentation can be quite variable, so there may be people walking around with Proteus Syndrome who don't know that they have it. Only 200 + cases have been reported, so it's hard to get an idea of the death rate at this time.

Good luck!  (+ info)

Why haven't they found a cure for proteus syndrome?


My fiance had proteus syndrome and she died on July15, 2008. I am not sure what part of her condition killed her, but are they even working on a cure? She never let her condition bring her down, but the last few weeks of her life she was suffering. I did everything I could tomake her comfortable, but she died sometime early that morning.
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They are working on trying to find out the causes of proteus syndrome. The causes are still unknown, thus we are not able to find out how to stop it yet.   (+ info)

Are individuals born with Proteus Syndrome or is it developed over time as an adult or teen?


Thank you!
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They are born with it, it is a genetic mutation. There are support websites with more info if you google it.  (+ info)

Is there a list of people who have Proteus Syndrome?


I need it. Please and thanx!
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I searched on the internet, there was quite a bit. You can try to look at www.mayoclinic.com and may be able to find a support group there who may know some people with this syndrome.  (+ info)

Proteus Syndrome Web-based reference research project?


I need at least 1 more site to complete my project, and I have already used wikipedia and proteus-syndrome.org. The site has to be a .gov, .edu, or .org site or else points are taken off. If needed, I can use more than three sites because there are 8 topics needed to be covered. This is whats left of the 8 that i still need.

2.Because the disorder is inherited genetically, where is it found?
2a. Identify the chromosome, is it sex-linked or autosomal
2b. dominant or recessive
2c. source of mutation

6. Treatment
6a. current technology- gene therapy
6c. prognosis

7. additional problems associated with disorder
7c. social
7d. financial

8.who funds the reference

Thanks to those that try and help!
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search the national institue of health (nih.gov). also you can look at abstracts on pubmed.gov.  (+ info)

Proteus syndrome...if you know anything about it...?


Is proteus syndrome a single base substitution disorder and if so, what is the missing/mutant protein that is the cause of the symptoms and if it dominant or recessive; or is it a chromosomal mutation disorder?

if you don't know, a link would be great! please help, i can't find it when i search online...
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