I am planning a trip to Cedar Point in Sandusky Ohio, on aug 28-30. I am inviting everyone with NF or affected by it to come and make this a NF Gathering. I...
I am planning a trip to Cedar Point in Sandusky Ohio, on aug 28-30. I am inviting everyone with NF or affected by it to come and make this a NF Gathering. I...
oh boy i would love to go but the problem is money i dont have the moeny to
pay for the tickets or anything is to bad i would love ot meet other people
that...
Hi Everyone! Has anyone tried using Skype and doing a conference call? Considering that most of us can't afford to travel to meet each other, Skype conference...
hi all, I am male, 30 and have nf1. I have number of bumps around 150.Mostly on chest and back .Some large (around 10-12 are of the size of pea) and mostly ...
sometimes having them remove for some reason can trigger more to grow, most Dr's won't remove them unless they cause pain or other life threating problems,...
Hi Jhon, Thanks a lot for the reply, this would really help me There is one the largest and that is on my left thigh, i some time have pain with this. That is...
well i do have skype andi use it to chat with my mother that she lives in
mexico and im in south tx i would use it but im not sure if i would like to
people to...
We used Skype when our son was in Morocco for 2 months. Sometimes we would set the laptop at the dinner table and talk with him while we had dinner. It was...
Hi Zubair, Your right in saying if 1 of the parents has NF there is a 50% chance the child will be born with NF and if both have NF the child has a 75 %, if...
yes it is becasue i have nf1 and my first daughter shes 7 right now she has it too i did not know till she was born she was about 2 years old when i found out...
i have 2 names in skype here is my other one mispuglas u can add me if u want so we can chat one of this days. if u want. Tessy, Destiny, Andrea Merino ...
Hi John, Thanks for the reply again. You seem to know a lot about NF1. Well my main concern is that my children may not have it (a concern of all parents off ...
hi Zubair Yes I have heard of Pakistan, I have been to a lot of Countries as a Missionary with a Christian group, about 16 Countries I guess a few of them a...
Hi Jhon, Yes I do live and work in Pakistan (in capital city named Islamabad) to be sepecific. And you have visited 16 countries...wow... And you were in QA...
Hi Zubair, I wanted to reply to your post about removal of fibromas. I have posted several times about this. I have had great success with having these growths...
http://www.aurorahealthcare.org/yourhealth/healthgate/getcontent.asp?URLhealthgate=%2211650.html%22 hi Rita, this site says more tumors can grow, it does not...
This was on that website. What does it mean? "The Interinstitute Medical Genetics Research Program at the NIH Clinical Center conducts NF2 family history...
Hi Rita, Thanks for the detailed reply. Well I think the grow-back and nf1 being triggered may depend on case to case and how well nf1 was removed. Different...
Ever noticed that medical research announcements seldom come to fruition? Technobabble about so-called breakthroughs are announced daily yet our population...
So you feel the electron scope is wrong saying the DNA chromosome #17 is defective ? how long do you feel NF has ben around and when the first DR to write...
sorry I don't know a lot about NF2, do you have NF2 ? if you do, you are among the few, there are only about 120,000 people in the world that have it. maybe if...
i have nf 2 is very mild but i have a lot of bumps on my chest my stomach my face and arms. Tessy, Destiny, Andrea Merino ________________________________ ...
Hi again Zubair, The c02 laser is c (the number zero) 2. I just wanted to clarify that. whatever choice you make depends on the size I would supopose. If you...
I live in texas and I also have neurifibromatosis and my back is corved in tumors. I hate it I jate my life right now in july I will be 29 and I fell so alone...
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