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we are all related ? (read all to get wt i meen)
- By andrew-herbert · New reply 11:07 am
- Discussion in Off-Topic · 8 replies
- this might sound like an odd topci name but last night i had insomier aghin and i got thinging if nf is a genctic condishon what are the chances that we are all related some where along the line i no ...
When it rains it poors for Kiley
- By KELLY29 · New reply 10:43 am
- Discussion in NF1 and children · 5 replies
- I dont understand, i feel as if my 5 month old daughter has won the shit lotto. First she is diagnosed with nf1 out of the blue. Never heard of it until her. IF IT CAN GO WRONG IT WILL. My daughter just ...
NF walk
- By mommyoftwo35115 · Posted 10:40 am
- Discussion in Off-Topic · 0 replies
- For thos e of you who live in or around Leeds, Alabama I am putting on a walk for NF. I would like for eveyone that is availible are who is able to come to do so. Its the first one in Alabama so please ...
Question...probably for Cindy about Von Hippel and freckles
- By alligans · New reply 10:02 am
- Discussion in Newly diagnosed with NF1 · 6 replies
- My dad has just been diagnosed with renal cell carcinoma (not sure of which subtype yet). My grandmother died of kidney failure and it was assumed that her kidneys failed because of the several medications ...
Scared about NF1 malignancies
- By alicia0414 · New reply 9:20 am
- Discussion in Newly diagnosed with NF1 · 3 replies
- Hi! im 22 years old and have been diagnosed with NF1. My biggest concern is the tumors turning malignant, and them developing in my brain and along my spinal cord. My question is how often do people do ...
Now my second child has been diagnosed with NF1?
- By Mammaof5 · New reply 8:12 am
- Discussion in Newly diagnosed with NF1 · 8 replies
- Maybe this is a question for CindyLouWho or anyone that can help me..I took my son to the neurologist today and he is undiagnosed w/ hypotonia and some other little things. But as we were speaking I mentioned ...
Meds for pain
- By kitty73 · New reply 5:38 am
- Discussion in Living with NF1 · 1 reply
- I was woundering what people where taking for pain? My doc has started me on Gabapentin? Has anyone heard of this or taken it ...
Moving on from another IVF with PGD unsuccessful cycle?
- By NF1-LMK · New reply 12:00 am
- Journal · 3 replies
- Hey Everyone, I'm having a really hard time this round with IVF with PGD not working. It's been almost two weeks and all I do is cry. I'm obsessive over every bump that has grown on my body since my first ...
Sleeping Issues
- By sunchaser · New reply yesterday at 8:55 pm
- Journal · 13 replies
- I'm having a very hard time trying to sleep tonight. Norco doesn't make me sleepy. I would rather eat a pot brownie or take a couple of bong hit but, I'm not that lucky, or in a medical MJ state. I'm ...
10-year-old MAY have NF1.............
- By MadisonWI · New reply yesterday at 8:08 pm
- Discussion in NF1 and children · 8 replies
- My 10-year-old has just developed more than 6 CAL spots, but no other symptoms identified. The dermatologist is concerned about NF1. He'll see an opthamologist to determine if any eye issues. If his eyes ...
The Song Game 2!
10 Cals and only 1 freclking in the armpit
- By Mammaof5 · New reply yesterday at 4:10 pm
- Discussion in Newly diagnosed with NF1 · 7 replies
- Ok well we got the paperwork back from the genetics clinic and they want to see Easton (4 yr old) at the NF clinic every yr and it says there is a probability that he has NF1 but has not been diagnosed ...
schwannomatosis
- By msmith14 · New reply yesterday at 3:45 pm
- Discussion in Schwannomatosis · 5 replies
- Does anyone have advice for someone who feels like they are getting the runaround? Knowone wants to operate because of teh number and location of my tumors. I feel helpless ...
enviorment
- By mk74tom · New reply yesterday at 3:34 pm
- Discussion in Living with NF1 · 7 replies
- I often wonder even though their is not suppose to be a enviormental connection. I am starting to wonder if their is. Becuase their are areas where their are cluster of NF. Kansas City is one of them ...
surgy
- By shorty2121 · Posted yesterday at 2:14 pm
- Discussion in Living with NF1 · 0 replies
- I wondering if anyone knew if they had the technoalgy to use lazers in doing surgy for nf1 tumors that are mixed in with nevours? I was also wondering if headachs are some symptoms to nf1? the tourmers ...
surgery
- By chat2sue2003 · Posted yesterday at 9:06 am
- Journal · 0 replies
- final got my hospital appointment in to have the operation on my back done i go in on the 14th sept ...
Avastin and pseduarthrosis
- By keetmommy · New reply yesterday at 6:40 am
- Discussion in NF1 and children · 16 replies
- My dd Emma is 8 and has an optic glioma that she is being treated with avastin, she also suffers from pseduarthrosis, we are finding her leg is bowing more. We are wondering if it is the avastin or if ...
nf1 breast cancer?
- By donaldsonc6 · New reply yesterday at 1:27 am
- Discussion in Living with NF1 · 4 replies
- Im almost 30 years of age I have NF1 , and have a family history of breast cancer in my moms aunt. When should I start getting mammograms? My son also was diagnosed with neuroblastoma at the age of one ...
A question
- By The_Night_Walker · New reply August 31, 2010
- Discussion in Off-Topic · 7 replies
- If you could ask any person liveing or dead a question what would you ask? I would ask Albert Einstein "Why do we sing "Rock a bye baby" to lull a baby to sleep when the song is about putting your baby ...
24 month old son has nf1
- By phenixsmom · New reply August 31, 2010
- Journal · 2 replies
- I have a 24 month old son named phenix who was diganosed with nf1 when he was 20 months old. I dont know why he has it and his 4 yr old sister doesnt. I am having a hard time with this,knowing my son ...
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