Join Tara, a young adult with NF1, who shares her journey and insights of life with NF through childhood into adulthood. Brought to you by the BC Neurofibromatosis Foundation (BCNF). Find out more at bcnf.bc.ca
I have not been throw any therapy but a lot of stress can trigger neurofibromatosis I live ever day not know if I have to go back to get surgery lately iv been ok but I pray to GOD to keep me safe and can I get ssi for having it
I have NF1 as well and struggles with my learning disabilities. I also struggled with epilepsy. I am now in the Neuro Filed helping others people that are struggling in different areas in their life.
I have nf1 and struggles with learning disability have had heart surgery when I was 7 because of a blood clot and school was hard math was the hardest for me
I also have NF1, I've been told by my parents I only have a mild case of it, so sad on how bad some peoples cases are and sad how well unknown this disorder is and how not a lot of people know about it so they can make fun of people when they have bad cases but they do not know the real reason why, bully is wrong and everyone is the same no matter if they look different or have disorders.
Hi! I'm Philippines and I see some people who has the same case but can't do anything about their condition. I still feel so blessed at the age of 28 now. I just found out about this yesterday. I thought it was just a skin tag. I'm married and I have a baby. I'm praying that their will be a cure so soon and this will not be passed to my daughter. Only God's grace can make me feel normal again. I'm not sure yet if my insurance will cover everything regarding the surgery.
I have NF , so does my mom and sister! Me and my sister are both blind in one eye because a fibroid grew on our optic nerve. My sister has had 15 spinal surgeries due to scoliosis her first surgery was when she was 2 and her 15 was last summer. NF has Been a part of my life since I was born....I don't have a bad case of it but that can change
Hi! I have a suggestion to liquefy neurofibromatosis lumps. Keep eating papaya fruit everyday, don't stop . Papaya liquefies cancer cells or tumors that is why it is used as meat tenderizer. Cancer cells /tumors don't have mechanism for repair or heal, it is just uncontrolled growth. Papaya don't affect healthy cells. My teacher had 3 breast lumps and they disappeared because she ate papaya for 3 months, she told us in class. If you don't believe me, google papaya cure cancer. I know its not cancer but it is tumor so is uncontrolled growth. Papaya just might liquefy the lumps so they'll disappear. I hope you try, you have nothing to lose , just all the lumps. My goal is to spread this advice to as many people with neurofibromatosis as i can because it saddens me to look at them. I hope my advice works, I don't have neurofibroma but I get desperate just looking at them.
I have NF type 2 I have around 40 something in my spinal column mine are not visible on the outside most growing inside I have two in my brain and I believe they're responsible for causing my seizures I have six of them located in my lumbar area of my back and causes me a great deal of pain I have many more throughout my body but most of them are inside my body cavity or under or be side muscles in my legs and arms like I said no one can see most of them unless I point them out I've had many surgeries done when I was younger and a few since I've been adult I do have them removed other than the seizures and the pain it doesn't cause me too many other problems I'm in Knoxville Tennessee and there are no doctors here that know anything about this disease luckily I found a doctor who was willing to learn a little bit about it to manage my pain but he has no idea the amount of pain I'm in from this I was diagnosed when I was 13 I'm in my forties now I was not supposed to live to see 30 or at least that's what the doctor said I cannot have the ones in my lumbar removed because they're afraid they will grow back the other direction and go into my spine which will cause me to be paralyzed I don't know anyone else with this disease so if you ever want to just talk or you have any advice for any doctors close to where I'm at you can message me on Facebook under Tim L. Inman in Knoxville Tennessee the picture here is the same picture on my Facebook page you can send me a friend request if you would like
I have seizures to brother if you go to a doctor about it they will try you on kepro I don't know if it works for anyone else but it did not work for me it's because most doctors don't know what NF is I have type 2 and have to educate every doctor I go see about the disease some listen most don't if you find one who's willing to learn keep them
