Living with Neurofibromatosis: Stories and Experiences

I was wondering if anyone here has any firsthand experience living with neurofibromatosis.
Any kind, really.
Whether it’s you, a family member, or just someone you know.

What was childhood like?
How did the diagnosis happen?
And what are the main symptoms or manifestations like?

mistydrifter55 said:I was wondering if anyone here has any firsthand experience living with neurofibromatosis.
Any kind at all.
Maybe a family member or just someone you know.

What was childhood like?
How did the diagnosis go?
And what were the actual physical manifestations?

I just realized while searching online that you’re dealing with the exact same thing I am!
I have this awful skin condition—it's just... I'm feeling pretty desperate, honestly.
Would it be alright if we messaged each other privately?

I’m reopening this thread because we just saw those
images everywhere in the news—that patient with neurofibromatosis being embraced by
Pope Francis. There was even an interview with him. This might encourage
other NF patients, or their families, to reach out.
Someone very close to me has NF1. Right now, most of the fibromas are on her
chest and back, some on her arms and legs, and tiny ones on her neck.
She’s had some removed through surgery, but now we're looking into
laser removal options. Does anyone know if such a
treatment can be handled through Dow Chemical? What has your experience been?
Let me know, whether you're dealing with kids or adults.
If you know anyone living with NF, please point them toward this forum.

If you spot any café au lait spots on your kid, there's a chance they might have
neurofibromatosis. NF is genetic, but that doesn't mean a parent has it—it could be an ancestor further back. Or, it's just a
random mutation that happened de novo. We don't know the exact cause; it’s likely a mix of factors, maybe even exposure to
radiation. You might also see bone issues, or problems with the child's behavior and development.
Shoot me a private message if you're dealing with NF or just have suspicions about it.
We could actually get somewhere if we teamed up—patients and families alike.

Anyone here actually used a CO2 laser to get rid of fibromas?
What’s been your experience with surgery?