pictures of individual with NF1

• By Blaster
• Reply 127484
• August 31, 2008 at 7:29 pm
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Lori...
There is an article in our local newspaper with a photo of a woman with NF1. She has Many fibromas.
If you Google NF1 you wil find many webpages with info....

Here is the link to the newspaper...

http://www.leadertelegram.com/

and a direct link to the article...

http://www.leadertelegram.com/story-fea ... HJ531B9F1S

• By Blaster
• Reply 127721
• September 1, 2008 at 10:54 am
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Hello again...
I see the direct link I copied does not work....
Here is another try at copying it....

http://www.leadertelegram.com/story-features.asp?id=BHJ531B9F1S

• By LoriNei
• Reply 127770
• September 1, 2008 at 1:13 pm
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Thanks. She does not look like that. It is more like her eye sticks out and the bones around the eye as well. I found a picture of a lady who has NF1 who looks like my daughter-in-law. That article explained that some sort of growth is behind the eye during gestation and it causes the eye to bulge out as well as the bony structure around it. Check this out:
http://images.google.com/imgres?imgurl=http://www.nature.com/eye/journal/v1 8/n9/thumbs/6701363f1th.jpg&imgrefurl=http://www.nature.com/eye/journal/v18 /n9/full/6701363a.html&h=112&w=150&sz=6&hl=en&start=95&um=1&usg=__hkXUmpiTj rutzhzH6mh8ULicc9Q=&tbnid=0676gGCk-tayXM:&tbnh=72&tbnw=96&prev=/images%3Fq% 3Dphotos%2Bof%2BNeurofibromatosis%2Beye%26start%3D80%26ndsp%3D20%26um%3D1%2 6hl%3Den%26rlz%3D1T4SUNA_enUS286US288%26sa%3DN

He sister has one big growth on her chin and I saw a man on the learning channel with the same type growth and he also had NF1. Thanks for replying to me. Lori

• By DrNiblik
• Reply 127825
• September 1, 2008 at 3:54 pm
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I have a cousin who affected that way, only he also has a plexiform over his eye in addition to the bone deformity. If I can get a picture of him scanned and uploaded to my computer, I will. He's a dead clever guy, he is. A nuclear pharmacists the last I heard.

• By Blaster
• Reply 127839
• September 1, 2008 at 4:28 pm
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I have a similar Plexi in the left orbit area.
22 years ago I had it partially removed... it was larger than a chicken egg...
What remains continues to grow (very slowly).
If you can enlarge my avatar you will see the scar.

• By LoriNei
• Reply 127885
• September 1, 2008 at 7:34 pm
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So, there is surgery to correct this? I feel really bad for the girl. Her mom told me that the only thing wrong with her was glaucoma, but I just knew it was more. I uploaded her picture and used it as my avatar so you could see what I am talking about.

• By Blaster
• Reply 127996
• September 2, 2008 at 5:59 am
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Some plexi can be removed many 'regular' fibroma can be removed.
Any Plexi Fibroma is risky to mess with.
Surgery on the face IS risky. Thus one should consult one or more of the following....
Plastic Surgeon,
Oral & Maxillo-Facial Surgeon
Dermatologist.....

The fibroma on my face was not completely removed because to do so would have removed part of my eyebrow.

there is another pic of me on photobucket... (walnutshells)

http://i200.photobucket.com/albums/aa108/walnutshells/DSC_4619.jpg

• By cdhester
• Reply 128041
• September 2, 2008 at 8:42 am
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I suggest she find a doctor who can give her a definite diagnosis. Especially if she is considering having children.

• By LoriNei
• Reply 128291 · In reply to 128041 by cdhester
• September 2, 2008 at 5:10 pm
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She is pregnant and due in 3 weeks.

• By inmemoryofjoval2007
• Reply 130732
• September 8, 2008 at 12:53 am
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If I knew how to send pics to you I would send one of my daughter. She has a tumor behind her eye and is missing her sphenoid wing. Her eye bulges and pulsates. She also gets a lot of headaches.

• By inmemoryofjoval2007
• Reply 130734
• September 8, 2008 at 12:58 am
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okay, I went to the link you put up and yes, that is like my daughter's face. Her face is asymmetrical also.

• By sjkang
• Reply 148742
• October 16, 2008 at 7:01 pm
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I know this may be a little delayed. However, I have to recommend not jumping to conclusions and making assumptions. You should encourage your son and daughter-in-law to ask their pediatrician specifically about any medical questions. What she has may be something similar to NF, but totally different.

Without any other details other than a visual impression a diagnosis cannot and and should not be made.

• By LoriNei
• Reply 149843 · In reply to 148742 by sjkang
• October 19, 2008 at 7:08 am
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Thanks. The baby was born Sept. 21, and all appears to be fine. Is NF1 always visable at birth?

• By Blaster
• Reply 150111 · In reply to 149843 by LoriNei
• October 19, 2008 at 7:04 pm
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NF1 may not be obvious at birth... (All I had was a couple CALS)
Anecdotal evidence suggests the later in life one develops tumors, the more likely their NF will be mild.... but there are no guarantees.