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Ldquo;Studies show that Nerofibromatosis occurs in almost 1:2,500 people. You are not alone.”. Join the conversation. Share your story. Tweets by @NF society NS. We look very forward to meeting folks similarly motivated and in touching lives. To contact NFSNS, email info@nfsns.org. Natasha’s journey with NF began in highschool when a bump appeared on her leg. Through her experience, she looks forward to raising awareness about NF. Click to read more. Click to read more. Click to read more.

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As with any new diagnosis, we’re often left wondering what next? Here are some things to consider after learning you or your loved one has NF:. Get the facts. Ask your doctor for literature or visit reputable websites to educate yourself. A list of such websites can be found on the “links” page. Register for the NF Registry. And the Schwannomatosis Database. Look into finding doctors in your area knowledgeable with your condition. Get support. That’s what we’re here for! Visit our support discussion forum.

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My name is Natasha Burgess Johnson and I am a recently married snowboard coach from Dartmouth, NS. I enjoy snowboarding, baseball, skateboarding, gardening and my husband and I are very often under major house construction (a shared hobby). Madeline Mitchell (and her mom, Christine). We may have NF, but NF does not have us. Glen Margaret, NS. All the incredibly painful electric-like bolts of pain I was experiencing now made sense (along with a host of other symptoms). Since then, I’ve had removed tum...

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Tumours on the nerves that lead from the ears to the brain which enable a person to hear. The process by which one gene of a pair causes the expression of a trait or disorder. Such a gene has 50% chance of being passed on to each child of an affected parent. Light brown flat spots on the skin, variable in size and shape. Six or more spots with a minimum diameter in children, and diamtere in adults is usually a sign of NF. Computer Axial Tomography (CAT) Scan. A type of brain tumour. Situated away from th...

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Nova Scotia Health and Support. Health and Welfare Initiatives, Programs and Services. Capital Health District Information. NF Society of Ontario. The Friedman Lab at UBC, Canadian NF Research. That we will support! John’s Hopkins University, NF Centre. Take Part Database, Registry and Other Important Links. NF Registry @ CTF. Research, events and information on new studies. Local, national and global resources, and NF signups. Or volunteer your time. Or have an idea? Glen Margaret, Nova Scotia.

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Neurofibromatosis2 (NF2) is considerably more rare than NF1 occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves as well as auditory nerves. Hearing loss is the hallmark of NF2 and often begins in the teens or early twenties as the first symptom. Affected acoustic and vestibular nerves are also responsible for the common symptoms of tinnitus (ringing in the ears) and loss of balance. Do I have NF2? Any two of the following: meningoma, glioma, schwannoma, ...

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Schwannomatosis is a rare form of NF that has only recently been recognized and appears to affect 1:40,000 individuals. Because it is so newly recognized, it is much less well understood than NF1 and NF2. Do I have schwannomatosis? Individual is over 30 years and all of the following,. Has two or more non-intradermal schwannomas, at least one with histological confirmation. No evidence of vestibular tumor on a high quality MRI scan. Has no constitutional NF2 mutation. Has two or more non-intradermal schw...

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Neurofibromatosis 1 (NF1) is also known as Von Recklinghausen NF and occurs in 1:3,000 births. NF1 is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin as well as enlargement and/or deformation of bones and scoliosis of the spine. Do I have NF1? This is a question best answered by a physician knowledgeable about NF, however, as a general guide, doctors will look for two or more of the following criteria:. Family history of NF1. Six or more cafe-au-lait spots. For many pe...

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Neurofibromatosis (NF) is a set of genetic disorders that causes tumors to grow on various types of nerve tissues. NF includes three distinct varieties: Neurofibromatosis Type 1. It’s in the Genes. The genetics of NF1 and NF2 are outlined below. Unlike NF1 and NF2, the inheritance patterns of Schwannomatosis are not understood due largely to lack of cases to study. However it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited. What is a Gene? The explan...

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WHat can I do? Any financial contribution would be greatly appreciated, as it will help provide the opportunity for more research and give those living with NF a better chance for earlier detection, and a higher quality of life through new treatments. Secure and convenient online donations can be made through PayPal, by clicking one of our “donate” buttons on the right. How else can I help? If you’d like to contribute to the NFSNS community in another capacity, please contact us. Or volunteer your time.