Talk:Schwannomatosis

1st seeing "low medicine importance" bothers me. This is because NF is so much more common than what the world realizes. Something that so many in the medical statistic community, have no clue about is how many people that are actually born with NF.

Those with the schwannomas, you think are EXTREMELY "rare". However, not anywhere near as rare as they think. I'm a HUGE advocate for raising awareness for NF. In 2016 I created a Facebook group that is only for peoplewho were born with NF to be a member of the group.

The purpose is to show the FACES of neurofibromatosis. So that'sthe name of the group. I started out with only two members, myself & my Mom and today we have over 13,200 NF members worldwide.

I KNOW that we have quite a few Schwannomatosis members in the group. So them saying 1 in 40,000... definitely more than that just based off actual people living with the disorder just as well as NF1 & NF2 but of course many more of those two. There are so many people in the NF community who have never been officially diagnosed because the family has always not talked about it growing up, ignored it, didn't go to see a Dr for it (still to this day, people don't/won't go for medical care for anything because there are SO MANY MEDICAL PROFESSIONALS who know nothing about NF.

This is why they don't see many NF patients if any at all.

NFers would rather be stubborn and just either "deal with it" or pretend as though it doesn't exist.

NF has been kept secret, hidden for over 300 years. It's time to EDUCATE the world about a VERY comon disorder that hardly anyone has ever heard of or seen.

Since most NFers are set in stone with the 'nothing can be done about it' attitude, it'llstill be awhile for change to actuallytake place.

I try every day to encourage more NFers to start talking about it to friends & family. Post about it. Most importantly, get an official diagnosis of the NF.

So many have never seen a Dr for it. They just KNOW because "that's what mom/dad had!".

But we really need for these "unaccounted for" NFers to get officially diagnosed so that the medical community can start putting well deserved with a very good purpose, money into research for treating NF.

So, you see, there is a high need for medicine to treat this neuroligical disorder.

I am 52 years old was born with NF type one I also have plexiform fibromas as well as the schwannomas on my body.

I have had tumors on my body ever since I was 15 years old. I have had roughly 25 NF surgeries.

Yet I literally still have thousands of the cutaneous fibromas, (externally) which technically, they're not really 'external' because the tumors are NOT "on top" of my skin.

They are actually my nerve endings causing them to push upward from beneath the skin surface and making it appear as though I have "bumps" all over my skin. Increasing the awareness is very important! If you know of any recruiting clinical trials for adults with Neurofibromatosis (NF) & the CRISPR gene editing therapy that I'd LOVE to participate in the study.

Feel free to follow me on TikTok & Instagram, same username, "Libertyeyes". I like to post frequent NF Fun Facts on social media to increase more awareness and encourage other NFers to raise more awareness with me. My motto, "If We're not Seen,    We Can't be Heard." ~ Libby There is so much truth in it. Facebook: Faces of Neurofibromatosis — Preceding unsigned comment added by 2601:804:8601:9700:39FC:726B:1064:D2C9 (talk) 07:31, 1 March 2024 (UTC)