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neurofibromatosis2 · A place for people with Nf to get to know others
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Re: [Neurofibromatosis] NF and the ELEPHANT MAN   Message List  
Reply | Forward Message #4985 of 6809 |
John Merrick had Protues disease. I don't believe he did have NF but he did indeed
have Protues........please don't be angry with the other writer is it bad enough to
learn that you have NF as we all do....he/we just need to understand that we all have
it and we are here to support eachother emotionally not financially....
----- Original Message -----
Sent: Friday, April 15, 2005 5:13 PM
Subject: [Neurofibromatosis] NF and the ELEPHANT MAN

From what I have read... it is possible that Joseph Merrick had NF but he ALSO had other diseases that caused his deformities.
It has been written that he did NOT have any cafe au lait spots... Here is an article I found on him and what has been determined about him and his conditions.
It sure would be nice to get rid of the "elephant man" comparison for NF. 
Amy
Mom To Jamie (with NF) and Jeremy (withOUT NF)
 
 


Fri Apr 15, 2005 9:46 pm

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cleo5899
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Forward 		Message #4985 of 6809 |
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John Merrick had Protues disease. I don't believe he did have NF but he did indeed have Protues........please don't be angry with the other writer is it bad... 		Genevieve Seymour
cleo5899
Offline Send Email 		Apr 15, 2005
9:46 pm

I am not mad. When I first learned that my son had NF, we too thought that it was "elephant man" disease or something like it. I apologize if my email ...
dstydream@...
parentofnfchild
Offline Send Email 		Apr 15, 2005
9:57 pm

HI AMY----HOW OLD IS YOUR SON? I HAVE A DAUGHTER WITH NF AND SHE IS 11, HER NAME IS ROBYN. SHE HAS A MUCH MILDER CASE THAN YOUR SON, BUT I WANTED YOU TO KNOW...
Dora Forfar
dodie_64
Offline Send Email 		Apr 15, 2005
11:52 pm

AMEN!!! Genevieve Seymour <cleo5899@...> wrote:John Merrick had Protues disease. I don't believe he did have NF but he did indeed have...
Dora Forfar
dodie_64
Offline Send Email 		Apr 15, 2005
11:53 pm

My son is 8. He just turned 8 in September. If you would like to see him... he has a website. The address is _www.JamieYowell.com_ ...
dstydream@...
parentofnfchild
Offline Send Email 		Apr 16, 2005
1:10 am

Hello, Yes the old make your peace speech. Been there done that way to many times. Apparently not in gods plans. My son is 6, NF plexiform. And I have...
Robin Kerr
robinkerr_2000
Offline Send Email 		Apr 16, 2005
11:47 am
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