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Author Topic: What is Neurofibromatosis?  (Read 2398 times)

Vera Oudejans

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What is Neurofibromatosis?
« on: 02/08/2010 17:30:02 »
Vera Oudejans  asked the Naked Scientists:
   
Good morning Chris

I listen to you on Redi's programme on Cape Talk on a Friday.

The lady that phoned in asking you about a certain syndrome got me thinking to ask you about Neurofibromatosis.

I have a friend plagued with this vicious condition and all he's told by top neurosurgeons is to "learn to live with it".

This is after 2 huge ops to remove what they can of the tumour in the temple area of the head.

Do you perhaps have more insight on this condition?

I would so appreciate your input.

With thanks and kind regards

Vera        

What do you think?
« Last Edit: 02/08/2010 17:30:02 by _system »


 

Offline MartinTheK

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What is Neurofibromatosis?
« Reply #1 on: 07/08/2010 20:17:51 »
The entry in the wikipedia explains this better than I can...

Neurofibromatosis (commonly abbreviated NF) is a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The disorder affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Cellular elements from these cell types proliferate excessively throughout the body forming tumors and the melanocytes function abnormally resulting in disordered skin pigmentation. The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.[1]

Since the disease is inherited the only recourse is genetic counseling (if you or your partner have an affected relative) to prevent it. If it were me I would seriously consider adoption, but that is, of course, a personal choice. NF can be a very severe problem.

A support group may be found at Neurofibromatosis Cafe at http://www.reggiebibbs.com

Good luck to you and your friend
 

Offline DoryT

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What is Neurofibromatosis?
« Reply #2 on: 09/08/2010 06:08:59 »
There's type I and type II, which one does your buddy have?
« Last Edit: 09/08/2010 08:16:32 by DoryT »
 

Offline MartinTheK

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What is Neurofibromatosis?
« Reply #3 on: 09/08/2010 08:03:55 »
NF can have a presentation as Type I or Type II or some times as achwannomatosis or even an idiopathic presentation with aspects of all three. The actual name is of little use to a layman... but rather an experienced interdisciplinary team experienced with management of the disease.

It is quite possible your friend would find the best care at some sort of teaching hospital where there may be such help. Is there anything like that nearby?
 

The Naked Scientists Forum

What is Neurofibromatosis?
« Reply #3 on: 09/08/2010 08:03:55 »

 

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