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Privacy and control

By Brian · New reply yesterday at 11:41 pm
Journal · 26 replies
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 ...

chronic migraines...

By LillyTony · Posted yesterday at 10:47 pm
Journal · 0 replies
my son was diagnosed w/nf1 about 4 mths ago and since then he has had episodes of random fevers of about 104 for 2 weeks straight every month and he has abnormal bowel mvmnts as well. One day he'll have ...

Soul-Crushing Depression

By DrNiblik · New reply yesterday at 10:31 pm
Discussion in Living with NF1 · 11 replies
I'm not sure if it even had anything to do with NF, but I am given to periodic bouts of near suicidal depression. It doesn't usually last long, maybe a day or two, and then it passes. I'm sure this notion ...

Behavior Problems and NF

By neurowhat · New reply yesterday at 8:28 pm
Discussion in NF1 and children · 6 replies
Is anyone else expierincing behavior problems with their child throwing raging fits and beating them selves? I don't know what to do and I am realy sad for my son. I feel like I am loosing it. We have ...

Sam Update

By Noelle · Posted yesterday at 7:44 pm
Journal · 0 replies
So, Sam's Oncologist and I talked tonight. She does not have any more information on what Sam's next course of treatment will be. She is waiting for one more doctor's advise. She also wants to know if ...

Hormone Replacement

By moonlight1964 · New reply yesterday at 2:24 pm
Discussion in Living with NF1 · 6 replies
My NF doctor recommended that I stop taking my hormone therapy as they think that can cause more growths in older women. Has any one else had experience with this ...

Anyone have a Double Whammy?

By NFADULT · New reply yesterday at 9:22 am
Discussion in Living with NF1 · 9 replies
Does anyone have more than one type of NF? Like NF 1 and NF2 or schwanomatosis. Just curious. I am told it is very rare, but it does happen ...

NF1 Pregnancy advice needed

By shebie226 · New reply yesterday at 3:02 am
Discussion in NF1 and pregnancy · 4 replies
I want to start a family but concerned about how my nf will be affected. I would like people to let me know their experiences and how pregnancy affected their nf. did you notice growth of existing neurofibromas ...

Sam Update

By Noelle · New reply yesterday at 2:48 am
Journal · 5 replies
Hello: Sam is out of surgery. I have not seen him yet. They were able to perform one of the procedures (the lung surgery), which went well. They were not able to place a ureter stent in due to the tumor ...

Prickly Skin

By LDK · New reply August 27, 2008
Discussion in NF1 and children · 5 replies
Hi again all! My 8 year old mentioned something the last couple of days that seemed weird to me, so I thought I would throw this out there. She says that sometimes, when she goes out in the sun, her skin ...

Breakfast Cereal

By DrNiblik · New reply August 27, 2008
Discussion in NF1 and children · 12 replies
With school starting, it fell upon be to be dispatched to go to the store and get lunch and breakfast stuff for the kid. Walking up the cereal ailse, the thought struck me that all of these breakfast ...

'' IN PAIN''

By shellymoon · New reply August 27, 2008
Journal · 14 replies
On Aug 25, 2008, at 3:54 PM, Shelly wrote: I am having a lot of seizures so many that my mommy is taking me back to Houston next week to see my neurolgist, I also am having migraines, was just diognosed ...

Sam Update

By Noelle · New reply August 26, 2008
Journal · 1 reply
Sam went in for his procedure about 12:00. They are going to do both procedures, which should take about 2 1/2 - 3 hours. I will update more when I find out any more information. REMEMBER, WE ARE BOLDLY ...

Sam Update

By Noelle · New reply August 26, 2008
Journal · 1 reply
Good Morning: Sam's surgery is scheduled for 12:00 today. I'm still not sure if they are going to put the stent in his ureter today or not. His lung needs to be taken care of first, a talc pleuraldesis ...

Any suggestions?

By jonsmama · New reply August 26, 2008
Discussion in Newly diagnosed with NF1 · 8 replies
Hello Everyone! We are in the process of adopting a three year old boy from Haiti who has been diagnosed with NF1. We would like to get him a medical visa so he can have an MRI, see a opthomologist and ...

Getting Insurance

By heather29_1 · New reply August 26, 2008
Discussion in Living with NF1 · 4 replies
Does anyone that has NF have problems getting health insurance? My husband has NF 1 and he has tried several different places to try to get health insurance and no one will cover him because of his NF ...

Sam Update

By Noelle · New reply August 25, 2008
Journal · 1 reply
Sam's procedure was supposed to start at about 11:00, but did not until 12:00. The procedure itself only lasted about 1/2 hour. They drained about 10 ounces of fluid from Sam's lungs and more is still ...

clogged throat feeling...

By dumond123 · New reply August 25, 2008
Discussion in Off-Topic · 6 replies
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 ...

Sam Update

By Noelle · New reply August 25, 2008
Journal · 5 replies
Hello: Sam was having a hard time breathing today and wasn't feeling well. I took him to the hospital where he was diagnosed with fluid on his left lung. He was admitted to DHMC (Dartmouth-Hitchcock Medical ...

Thalomide

By Noelle · New reply August 25, 2008
Discussion in NF1 and children · 1 reply
Has anyone heard of using Thalomide for scarcomas? Sam's doctor and I are talking about using that along with Sam's chemo treatments of Etoposide and Cyclophosphomide with Celebrex. I was just wondering ...

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The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration. The Neurofibromatosis, Inc. Support Community is sponsored by Neurofibromatosis, Inc. in partnership with Inspire.