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tamimallett

my 2 yr old just diagnosed with neurofibromatosis type 1. what should I know.

Posted by @tamimallett in Brain & Nervous System, Oct 3, 2011

Im a mother of a 2 year all that was just diagnosed with neurofibromatosis type 1. I am really scared and need advice.

elizabethrice

Posted by @elizabethrice, Oct 5, 2011

Hello - Thanks for your post. I'm not sure if you've already seen this content, but I wanted to direct you to some general information about neurofibromatosis on our web site here: http://www.mayoclinic.com/health/neurofibromatosis/DS01185. And here's some information about treatment of neurofibromatosis at Mayo Clinic: http://www.mayoclinic.org/neurofibromatosis/?mc_id=comlinkpilot&placement=bottom. Mayo Clinic doctors in the Neurofibromatosis Clinic at Mayo Clinic in Minnesota are experienced in evaluating and treating neurofibromatosis. If you'd like to request an appointment at Mayo Clinic for your child, you can click on the "Request an Appointment" button at the top of this page.

Karen I Nelson likes this
deliasanderson

Posted by @deliasanderson, Nov 6, 2011

THAT'S UNFORTUNATE. YOUR LITTLE GIRL WILL NEED YOU FOR THIS JOURNEY. I HOPE SHE HAS VERY LITTLE PAIN AND A FULL RECOVERY.

nfrunner

Posted by @nfrunner, Nov 20, 2011

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.

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