This group is designed for those who have NF, family members with NF or if you have friends with NF. We are all here to support each other like one big FAMILY.
I am 29 years old. I have had NF1 since the age of 3 years old. I only have a learning disability because of it. I have none of the other problems that usually come with the NF.
My fiance and I plan on having kids soon. We know the chances of our children having NF are 50/50, we are willing to take that risk.
Hi. I just joined the NF group. I have NF1 and NF2. I'm in constant pain. I was dignosed at the age of 3yrs, and it seems all of a sudden in the last six months to have gotten much worse. With tumors popping up everywhere, and old ones growing. I have a very bad scoliosis.
But i have to stay positive or try to.
hi my name is terri i am 42 and single also i LOVE JESUS
i am the first in my family with nf but have a very supportive family
i have had 2 major surgeries and also some removed on the outside which was a nightmare compared to the surgeries
i am very excited to talk with others with nf and build an nf family
thats about it for now
God bless
Hi guys! I'm a single mom with 2 kids, a 13 y/o girl with nf1 and a 2 1/2 y/o boy who is nf free so far. I would love to meet new people especially parents like me who has kids with the same condition. By the way, I'm from the Philippines. Take care guys!!! Continue being strong and have great Faith in our good Lord. :)
Hi scareredartist! My daughter will undergo surgery nxt wk at the back of her left knee. Have to remove a soft tissue that's causing her frequent pains almost every night.
Hi,
My name is Patty. My oldest son, age 14, has NF Type 1. He was diagnosed at age 9. There are no support groups nearby and we are often lost as to what to look out for or whatever. We are hoping someone else with a teen with NF will be able to give us a little guidance. Thank you.
hello, i'm e...i found out last year i have NF2...i had surgery nov 1st last year to remove two tumors that were chocking off the spinal fluid in my spine...the micro neurosurgeon left several tumors in my back and spine because they are intertwined into my nerves...
Hi everyone. We just found out our 8yr old daughter has NF1. Still waiting for an MRI too see if she has tumors. She does have scoliosis, and the CAL spots all over. I am beyond scared. I don't know if she got it from me or my husband. If anyone has information or just helpful tips I could really use it. Thank you!
My fiance and I plan on having kids soon. We know the chances of our children having NF are 50/50, we are willing to take that risk.
But i have to stay positive or try to.
i am the first in my family with nf but have a very supportive family
i have had 2 major surgeries and also some removed on the outside which was a nightmare compared to the surgeries
i am very excited to talk with others with nf and build an nf family
thats about it for now
God bless
My kids are my pillars of strength...
My name is Patty. My oldest son, age 14, has NF Type 1. He was diagnosed at age 9. There are no support groups nearby and we are often lost as to what to look out for or whatever. We are hoping someone else with a teen with NF will be able to give us a little guidance. Thank you.