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hi troy im in the same shoes i found out when i was 9 years old more or less anyway I'm glad u email me so we can become friends, my face start to look this way after i got pregnant with my girls they told me it was 50 50 so my older has it but she only has does spots so shes OK for now sometimes the way people look at me it makes me feel I'm not a pretty woman and i now I'm not pretty but people should not judge me for my looks if u get to know my I'm very nice person i have a lot to give if i recive same as both my daughters i also had surgery on my back and face to take some out but they grow again so i need it again but i don't have the time if i go and do it who will take care my girls I'm all along my mom lives in Mexico but may be someday when they get older anyway I'm glad i get to meet u take
care and hope we become friends my yahoo messager is always on u can add me here is laredogirl_20006 so we can chat when u get a chance take care and talk to u soon.
Tessy, Destiny, Andrea, Merino
----- Original Message ----
From: troy bahten <sonoratroy@...>
To: neurofibromatosis2@yahoogroups.com
Sent: Wednesday, April 23, 2008 5:35:54 PM
Subject: Re: [Neurofibromatosis] HELLO EVERYONE
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From: troy bahten <sonoratroy@...>
To: neurofibromatosis2@yahoogroups.com
Sent: Wednesday, April 23, 2008 5:35:54 PM
Subject: Re: [Neurofibromatosis] HELLO EVERYONE
Hello,
My name is Troy. I have NF2. People look at me strangely because of my face also. I found out about my desease in 1988 when my left eye was hurting so much that it was hard to open the eye lid. I was having sharp pains and then they would stop and then start again.
I had alot of tests from here in Sonora on through to S.F. Ca. I was in a waiting room after hours to see this Dr. The door to the hallway was open, when an older man walked bye and saw me. He asked the Dr. what my problem was and the Dr. told him that they could not fine the answer. After a small conversation, the man walked in and got a small peice of typing paper and laid it on my fore-arm and waited. In a short time, the paper started to dance---on my arm, it started to dance or move around. It was amazing, I have never seen anything like that, It was so bizzar. The man said to the Dr., That boy has NF- You look and see, you will find that boy has NF. The Dr. said that I didn't have calfolay spots and other things and the man said Idon't care what he dosen't have, He has NF. I don't remember the mans name, but he sure saved me from alot more tests.:) My face has lost alot of nurves on the left side, so it drupes, but I also have alot of tumors. I had a very large one removed in 2002 on my cheak bone. It was so large that I could not see my left ear in the mirror, even if I turned my head, I still could not see my ear. My face got back to normal when I had the surgery, but it has grown some, but it is still easy to work with.
I am afraid that I have to go now. I need to go to bible study. It was nice writting to you. I usualydon't type much because I am not very good, but I had afew minutes. :)
Take care of you and your daughters,
hi my name is tessy im new here im a divorce mom with 2 girls one is 6
and my baby is 4, my 6 year old and me we have neurofribromatosis and
i had learn to live with it is not been easy becasue when people see
me they judge me for the way my face is to my dauhgter u cannot tell
she has it yet anyway i joing here because i want to meet other people
with the same thiing and may be learn more about it i been divorce 3
years we live in south tx in laredo by the border of mexico well if
anyone wants to be my friend feel free to email me at
laredogirl_20006@ yahoo.com hope to meet everyone here soon.
tessy merino
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