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Walter
  • By Walter · Posted June 20, 2008
  • Journal · 23 recommendations
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

New feature: video!

Brian
  • By Brian · Posted June 28, 2008
  • Journal · 13 recommendations
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Privacy and control

Brian
  • By Brian · Posted August 27, 2008
  • Journal · 7 recommendations
  • At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...

Official diagnosis brings me to tears at Barnes & Noble.

aimee121477
  • By aimee121477 · Posted June 19, 2008
  • Journal · 6 recommendations
  • Well, I finally got a call from Kyle's neurologist letting us know what the MRI results were. No tumors, lesions or masses to be concerned about, however, the MRI did show spots called NF1 spots in his ...

Removal of NF Tumors

reeny97
  • By reeny97 · Posted July 20, 2008
  • Discussion in Living with NF1 · 4 recommendations
  • I am going to NYC tomorrow to meet with Dr. Weinberg a plastic surgeon who removes NF tumors through a process called electro-desiccation. He can remove hundreds of tumors at time. My surgery is on Tuesday ...

clogged throat feeling...

dumond123
  • By dumond123 · Posted August 22, 2008
  • Discussion in Off-Topic · 3 recommendations
  • ok so, im only 15 and for a few months no i have had this feeling like im being choked or like my throat is all swollen up, but i can eat, drink, talk, and breathe fine.... my parents have been telling ...

optic gliomas

sunshinechild
  • By sunshinechild · Posted October 20, 2008
  • Discussion in NF1 and children · 2 recommendations
  • Hello, My daugter is 4 1/2 with nf1 and I was told by the eye dr. her eyes are fine. We have gone twice so far. We have to go in another year. I was wondering if an optic glioma can be missed by the eye ...

HANDY LITTLE CHART

chefdavid
  • By chefdavid · Posted August 7, 2008
  • Journal · 2 recommendations
  • God has a positive answer: YOU SAY GOD SAYS BIBLE VERSES You say: 'It's impossible' God says: All things are possible (Luke 18:27) You say: 'I'm too tired' God says: I will give you rest (Matthew 11:28-30 ...

Hello...

13amyers
  • By 13amyers · Posted June 29, 2008
  • Journal · 2 recommendations
  • I have had NF1 since I was born. At first it started out with some here and there, but now I have a gazillion everywhere. YOu cant really tell I have it unless im wearing shorts or a dress because they ...

MRI Questions

Kivalina
  • By Kivalina · Posted June 26, 2008
  • Discussion in Living with NF1 · 2 recommendations
  • Any Ideas what this means? Mri says Several soft tissue masses in pelvis.These may be merely related to bowel as opposed to neurofibromas involving lumbar plexus. Further evaluation with CT should be ...

Embaressing/personal question

banana1946
  • By banana1946 · Posted November 19, 2008
  • Discussion in Off-Topic · 1 recommendation
  • Hey Everyone, So I hope I don't step over any boundaries or personal space in asking this question, but I have to know if its just me, or if its a part of NF. I was diagnosed with NF1 at 3, I am now 28 ...

"My eyes hurt mama!"

aimee121477
  • By aimee121477 · Posted November 10, 2008
  • Discussion in NF1 and children · 1 recommendation
  • My son is constantly telling me that his eyes hurt. At first I would just shrug it off. He tends to say things just to get attention. (he is 3 and developmentally delayed) But then he started saying it ...

Severe hip pain

gmt6777
  • By gmt6777 · Posted October 31, 2008
  • Discussion in Living with NF1 · 1 recommendation
  • Hello everyone! I am a 31 year old female living with NF1. I have many of the symptoms of it. optic gliomas, a few lich nodules, neurofibromas, cafe-au-laits, twisting of the spine, severe migraines ...

I don't know

HeathBar
  • By HeathBar · Posted October 24, 2008
  • Journal · 1 recommendation
  • I can't believe its been a year since my tumor was discovered. Still a few more weeks until its been a year since I found out about NF. I was taken out of school, put back home a thousand miles away from ...

Lost Again

aimee121477
  • By aimee121477 · Posted October 14, 2008
  • Journal · 1 recommendation
  • Ok so Kyle had a neurologist appointment today. It was the first appointment after the official diagnosis of NF1. I went in expecting it to be somewhat informational. Yeah right. The doctor gave him a ...

Please pray

Noelle
  • By Noelle · Posted October 3, 2008
  • Journal · 1 recommendation
  • Good Morning: For those of you who are believers in God, please pray for The will of God for my marriage. It is very strained and hurtful words were said last night. Things are strained. I am asking for ...

I don't feel pretty for my husband anymore

BunnyMom
  • By BunnyMom · Posted September 30, 2008
  • Discussion in Living with NF1 · 1 recommendation
  • I am 9 months pregnant and of course increase of NF as appeared all over my body plus other unusual growths. I just don't feel pretty anymore for my husband. I also seen a decrease of love and affection ...

student

LauraJ
  • By LauraJ · Posted September 5, 2008
  • Discussion in NF1 and children · 1 recommendation
  • Hello everyone. I wanted to share this story. I am a middle school teacher. While I was passing out paper the other day to my students I noticed CAL spots on one of my students legs. I already knew she ...

Meeting set for Nashville, TN Sept. 10

cdhester
  • By cdhester · Posted August 9, 2008
  • Discussion in Living with NF1 · 1 recommendation
  • CHILDREN’S TUMOR FOUNDATION FORMS NASHVILLE CHAPTER Dr. Kim Hunter-Schaedle to give update on NF research, trials The Children's Tumor Foundation (CTF), a non-profit medical foundation dedicated to improving ...

Leg Cramps

tampicoj4
  • By tampicoj4 · Posted July 24, 2008
  • Discussion in Living with NF1 · 1 recommendation
  • My mom has been suffering with very bad leg cramps mostly at night and she has a very hard time walking,she often will lose her balance.Looking for someone with these simlar problems ...

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