Newly diagnosed with NF1

Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).


1 year old baby newly diagnosed with NF1

  • By babyshahnaz · New reply February 12, 2014
  • 1 reply
  • my daughter was diagnosed with NF1, large CAL patch on back n numerous patches all over body. strawberry red patch on right hand. large head, slow growth but she is an active vibrant child. read numerous ...

Insurance Appeal

  • By DinoJack · New reply February 5, 2014
  • 2 replies
  • Hello Inspire! I have a potential insurance concern that I want to address in hopes that someone else has been through this before and has any experience or advice to offer. We are seeing a geneticist ...

New to this

  • By Machain · New reply February 3, 2014
  • 11 replies
  • Last year I was diagnosed with NF1, I have tumors in every level of my cervical spine. My doctor was able to remove 5 of them with 2 surgeries, a 22 hr & 14 hr long surgeries. I don't take any pills or ...

Best hospitals in Texas or Florida to treat Neurofibromatosis?

  • By Coralys · New reply January 29, 2014
  • 5 replies
  • My mom has been diagnosed with NF1. We are from Puerto Rico and the doctors here tell us that our best option is to go to the U.S and find differents helps there. I searched different hospitals and information ...

Genetic testing soon

  • By DinoJack · New reply January 28, 2014
  • 76 replies
  • Hello. My son is 6 years old. He turns 7 in January. He was born with a cafe au lait on his temple (it is also hairy). Since then he has developed 4 more. Two are on his torso (one is exceptionally small ...

What kind of Doctor is used to as the lead Dr with NF ?

  • By AnthonyMelo · New reply January 27, 2014
  • 10 replies
  • What kind of Doctor is tasked with overseeing a patient with NF ? What kind of Doctor makes the diagnosis of NF, NF 1 or 2 ...

sudden onset neurofibromas?

  • By newparent · New reply January 20, 2014
  • 5 replies
  • Actually, I am not sure if we have a diagnosis of NF1. All i know is that my son (9yo) has multiple cafe au lait spots. I know this isn't enough to meet the clinical criteria. But, within the last few ...

Infant Diagnosed

  • By hollyt508 · New reply January 16, 2014
  • 8 replies
  • Hi I am a grandmother of a 1yr old boy newly diagnosed with NF, The only symptoms he has so far are the spots and freckles. He can't walk or talk yet. He walks holding on to something but not on his own ...


  • By Fahd · New reply January 14, 2014
  • 3 replies
  • A patient has a lower back pain and right leg pain. In MRI of spinal they say that she has neurofibromatosis tumor in lower spine which is compressing the nerve. Is it safe to do lower back exercise for ...

In here looking for a job

  • By wrb_79 · New reply January 5, 2014
  • 6 replies
  • What the hell Where are the jobs God gave me NF1 and know, where are the jobs ...


  • By Krissyleel48 · New reply November 21, 2013
  • 15 replies
  • My son is 12. He had a rapid onset of scoliosis and took him to pediatrician and he was diagnosed with NF1 . sent to a neurologist and then got an MRI. The MRI found a huge tumor encasing his aorta. I ...

Can genetic testing results provide clues re: prognosis?

  • By Proud_Momma1 · New reply November 16, 2013
  • 2 replies
  • Hello all, My daughter received the NF1 diagnosis last January 2013, at one year old, as we noticed many cafe-au-lait spots, freckling, and multiple xanthogranulomas (I know - not a dx criterion, but ...


  • By Krissyleel48 · New reply November 14, 2013
  • 4 replies
  • My son is 12. He had a rapid onset of scoliosis and took him to pediatrician and he was diagnosed with NF1 . sent to a neurologist and then got an MRI. The MRI found a huge tumor encasing his aorta. I ...

Tibial dysplasia and NF1

  • By Kanikaain · New reply November 10, 2013
  • 1 reply
  • My daughter is 22 months and was recently diagnosed with NF1. She also had tibial dysplasia as a result of NF1. I want her to live as normal of a life as she possibly can. She has a twin that does not ...

Plexiform neurofibroma on the tongue

  • By FJNS · New reply November 2, 2013
  • 14 replies
  • Hello everyone, My name is Filipe Soares and I am from Portugal. I registered in Inspire only a couple of months ago and this is my first post. I would like to thank you all for your discussions which ...

i would love some advice

  • By tammylynn33 · New reply November 2, 2013
  • 9 replies
  • hi im new here my 18 month old baby was diagnosed last week with nf1 we are very confused and scared as we have never heard of it before please can some one tell us about it im very reluctant to look ...

NYS = middle class screwed

  • By b_farnham427 · New reply November 1, 2013
  • 8 replies
  • because of my surgery time off work i am loosing my health care.. thank you NYS labor and healthcare laws. if this is not resolved in 2 weeks i will be pennyless, and homeless. looks like disability will ...

4 year old just diagnosed

  • By mrsb8 · New reply October 29, 2013
  • 6 replies
  • My 4 yr old daughter was diagnosed with NF1 last week. She has a plexiform neurofibroma on her hip/pelvic bond. We have met with hemotologist/oncologists who do not reccomend surgery but we are meeting ...

My son has NF1 - now experiencing floating obects

  • By Teroro · New reply October 27, 2013
  • 15 replies
  • Hi, my son was newly diagnosed earlier this year with NF1. He is now seeing floating objects. Has anyone else experienced the same ...

NF1 segmental nf

  • By nanalynn9 · New reply September 26, 2013
  • 6 replies
  • My 11 year old grandson was dxd with nf1 about 5 yrs ago, the Dr thinks its segmental but we have been unable to find any information about it Has anyonehere ever heard of it ...

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