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Jun 4, 2016 · NF1 and Epilepsy related in Epilepsy & Seizures

Hello, as a person with a form of NF, I agree that café au lait spots are considered the first and most common indication of NF. I think the criteria says 7 or more spots. Since you both have spots, that would be something to definitely talk and show to your doctor. NF can be inherited (50%) or spontaneous. I belong to a Facebook group called NF Mom’s Rock and I recall posts about NF and epilepsy – others asking the same question as yours – is NF and epilepsy related?
I don’t know the answer but genetics could help you with that, too. I understand and share the feeling that NF alone is enough. While they talked of their children with NF and epilepsy, I don’t recall anyone citing any confirmed medical conclusion. I am glad to read that there is help for her seizures, little doll.

Mar 11, 2016 · Schwannomatosis (NF) in Brain & Nervous System

It sounds like your journey with NF has been more difficult than I could even imagine experiencing. Obviously, you have great strength. I am not a medically trained person but I belong to 4 NF Foundations and through them I have learned a lot about all forms of NF. The Children’s Tumor Foundation and NF Midwest are great information resources. 1993, at 39yrs, first surgery L2 – L4 and abdominal – NF barely known then. 2008, at 54yrs, second and third surgery – Schwannomatosis was a newly discovered form of NF. My genetic testing was through Mayo Clinic in Rochester. Insurance turned me down too, but Mayo Genetics Clinic and my neuro-surgeon re-applied and re-phrased the need for it 2X before getting approval. The first advice you will always hear is to find a clinic and doctors who are NF knowledgeable/experts. Some of the bigger NF Clinics have specialized pain centers. I love Mayo Clinic, this is where I have come since 1993. I have learned that NF is a genetic mutation, each form of NF a different mutation, there is no cure and no definitive way (yet) to keep tumors from recurring. Tumors grow on nerves, any nerves, anywhere there are nerves in the body. I can picture the tumor having a little root or foot to attach it to the nerve, like you described your surgeon saying. A tumor can be removed from the nerve and maybe it won’t return in that exact same spot, but the genetic defect can cause another tumor to grow right next to it on the same nerve or a nearby nerve. My surgeries did not involve removing any of the nerve. Thankfully, my L2 – L4 area does not hurt me. I incurred some nerve damage in 1993, but it is not in a painful way. Wow, you spent 2 years to walk again? I still remember the feelings and those I will never forget – how stunned, how grateful I felt when I literally walked out of those surgeries. Sadly, pain is one of the criteria most associated with Schwannomatosis. I so hope your last surgery in January was successful and is not causing you more pain. I can’t imagine being without my medical team and their support all these years! A connection, a bond, or just a friendship with them and caring for each other really makes a difference in helping to live with NF. I so hope you have found that too where you go for care. If you like this idea, there is a newly formed Facebook group called Adults with NF – Children’s Tumor Foundation where only adults share their experiences with NF and support each other. My thoughts and hopes are with you. I wish I could be more helpful.

Nov 28, 2011 · Neurofibromatosis in Brain & Nervous System

While I have a form of NF, I do not have any children or grandchildren with NF. I’m very active with advocacy for NF and may I offer some sources of support. The Children’s Tumor Foundation (CTF) for information on NF and to interact with through their Facebook page. CTF has a chapter in each state (inc. MN) that you can join. There is sharing on the Chapter FB page, and sometimes activities to join in. There is Neurofibromatosis Midwest and NF Inc. MN. The CTF has a FB page called Mom’s Rock and Dad’s Rock where parents and grandparents can share, ask questions and comment. The littlest tumor foundation WI has many activities for parents and grandparents with children who have NF. As a CTF NF Endurance Team Captain, I have met many parents with a child with NF, perhaps I can be of some small source.

Nov 20, 2011 · Schwannomatosis (NF) in Brain & Nervous System

Would anyone like to share their experiences with Schwannomatosis? I run, walk, bike, and snowshoe race with the NF Endurance Team and the Children’s Tumor Foundation to bring awareness and advocacy for Neurofibromatosis and Schwannomatosis. I’m passionate in my hope for a cure for NF. I’m a patient at the Mayo Clinic in Rochester, too.

Nov 20, 2011 · my 2 yr old just diagnosed with neurofibromatosis type 1. what should I know. in Brain & Nervous System

You can also learn more about Neurofibromatosis at the Children’s Tumor Foundation at http://www.ctf.org. The NF Clinic at Mayo Clinic Rochester is excellent, and an affiliated clinic, too. Through the Children’s Tumor Foundation website, you can locate a supporting NF Chapter in each state. The CTF has a blog called “Mom’s Rock” where you can share and talk with other moms of children with NF. Yes, NF is scary, but there is a lot of hope, support, and medical advances today. Support and sharing, as well as medical care from a pcp who knows NF will help make your journey and your worry easier.