Welcome to WSNF

March 3, 2011

Uncategorized

If you have Neurofibromatosis (NF), know someone who does, or are looking for information regarding NF… you have come to the right place! You are not alone. Facing a new diagnosis of NF, living with NF, or loving someone affected with this disorder, creates a multitude of feelings, concerns, and questions that only another with NF in their lives understands.

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8 Responses to “Welcome to WSNF”

  1. Donita White Says:

    Soon our niece, who has NF, will be coming to live with us. We really have very little information about this condition, so are looking for any ionformation we can find. We are also trying to find medical specialists located close to us in Oregon. I am not sure if this is the place to contact you, but are hoping for any information you can provide.

    Reply

  2. Cecil L, Gonzales Says:

    I have neurofibromatosis and I am 55 years old and i have had this all my life i would like verry much some help on this matter ploease.
    i’m at [deleted for security]

    thyank you from Cecil L, Gonzales

    Reply

  3. salomon Says:

    January 03 / 2012

    Greetings.
    From Venezuela, NF1 am patient, I can testify to this padeciemiento relationship, so that you can lead a normal life, with certain restrictions. Everything is in fitness for life, that everyone takes.
    A hug.
    pardon my English …

    Thanks for your attention
    goodbye to you.

    Lord. Salomon Delgado B
    Contact Phone: 58-426-9540869
    Email: salomon.ddv @ gmail.com

    Reply

  4. Pam G Says:

    Hi, my 7 yr old son has NF1…. As an infant his prior pediatrician, dismissed my conerns about his “birthmarks”…… since changing doctors at sge 4, it has been confirmed… that he has NF1, doing well.. welcome support….

    Reply

  5. Rebecca Says:

    I am 29 years old and I have had NF all of my life. Unfortunately I have never seen a specialist for it so I am learning through the internet. I am not sure what I am diagnosed as, but I think it is the Schwannotosis(sp), at least that sounds pretty close to my condition. I am trying to locate a specialist in the Seattle or Spokane area in Washington state. If you know of someone who would be worth the drive to see, please let me know.

    Thanks!

    Reply

  6. Raddington Says:

    Hey, so as far as I can tell you can get better treatment if the docs know if you have type 1 or type 2. There are of course physical signs, but there is actually a test offered at a lab in Alabama that differentiates between the two. Does any one have any suggestions on how I can pay or get assistance paying for these tests? Medicare will not cover the costs, the lab will not do a payment plan, and the price is above $2,000.00. Please let me know, thanks

    Reply

  7. April Says:

    Rebecca
    We go o Dr. Judith Martin in Spokane. SHe is a genetics doc, her office is in the Sacred Heart Doctors building.

    Reply

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