Charis Curbo was diagnosed with the complex disease more than a decade ago, and researchers at UT Southwestern have enrolled patients like her in a new clinical study.
I have this as well and I’m pregnant due in a few weeks and I’m just worried that my son is going to have it. I’m the only one in my family that has it
I am so sorry for those suffering from neurofibromatosis. I had a friend that had such condition, eventually tumors grew in her ears, it ultimately took her life. I think of her often. I pray & hope science will find a cure.
I truly understand all of your pain I myself have NF1 as well as my dad and brother I recently had one removed off my leg that was cancerous. My brother four younger children also have it. This is a great doctor I've seen him at UT Southwestern.
@@imthe2253 it's not that she's not hopeful it's that once you are born with nf1 it's for life you can only prevent your kids from inheriting it it's a mutation of your genes and last time I checked you can't change your genes after birth and they can already do a lot for us, such as those with severe form of our condition who could never have children because each generation the symptoms get worse. With the help of lab, they now have the chance to have a healthy baby they can remove difficult-lying fibroids (tumors) and with minimally invasive surgery and scars also inhibitors for those who would deteriorate at a later age and slow down this process even more so that it causes problems that start much later for every medical condition thay work every day and every improvement is a victory and gives us hope medical world never stands still and continues to improve making it easier to live with even though i find that people who treat us normally also help to live with my illness
I have NF1. I am 55, I was diagnosed at age 12 several years after my younger sister who lost her right leg because one developed in lower tibia at birth she also has NF1 as well as her youngest son, daughter and 1yr granddaughter. Our dad had NF1, he died in 85 from cancer and grieving for my sister and all. His NF was really bad. I know how all of you feel about facing the world. I make people remember me! I am open to questions. People make fun or say hurtful things because of ignorance and fear. I’m sure that we all see things we can’t wrap our heads around and don’t know how to approach and speak tactfully. If someone makes a off hand remark use humor, smile and wish them blessings, or complement them on how clever they are to come up with such remarks. Find your joy. They can only steal it if you let them. Children come up to me to get a closer look I smile and offer to let them touch the bumps on my hand or face I make a different sound for each.Soon compassion replaces fear, and soon the parents come and thank me for being kind. I know this is long winded this is from my heart. Be bold and remember you are wonderfully and BEAUTIFULLY made. God bless you all.
My wife does not have it but I passed it onto both our offspring who are now 28 & 24. Only our oldest offspring has several tumor signs upon their body, yet the three of us have the tumors deep within our bodies.@@Zayokwata
Sometimes I also feel very sad...why is me have this disease..I can’t same another’s people can wear beautiful dress and have pretty skin...I know this feeling....
Nf1 i have tumors is so bad I pray the lord my daughter never gets them . Since I was little I got bully at school for having spots . And now i have tumors just wish they stopped growing .
I have NF1..i feel so down whenever i see myself infront of the mirror..sometime i ask myself..can i get married? Can my future husband accept me?? How if when get married and my kids will get this NF..this is the reason i dont want to get married because i dont want my kids feel what i feel....😔😔😔..im sorry if my words hurt someone i dont meant anything..
dont be, you alouwd to feel this way, it's not fair and people can be so mean and shallow, but remember you are not alone and there are always good people who look beyond our looks. our spots (cafe au lait) make us unique , make us beautiful and in terms of children it is expensive depending in which country you live in but they can through lab and implantation make sure if we want children they don't inherit our disease and we are the last generation of our family with this disease
@@swagataj i don't know the exact name but what they do is ivf and before the re-implant,they count the selles so they can re-implant the healthy fertilized cells
back in April I started having ptsd where I was bullied / made fun of my NF back of neck and now in my late 20s I feel like now I want to cover it and not let anyone see it
Hi my name is ken myke l have nf1 it came out on me at 7 years old it at the bone over my left eye l think l have both nf1 and nf2 so l am in pain all the time and my family dr don.t help with the pain l went to a dr who studys nf1 and nf2 he never help me so l wish my family dr will help me l am 54 years old l got hit the worst in my family l wish the dr,s here in canada new more about nf1 and no l have bad pain in ny whole body near my left side of my face hurts soul bad that l cry in pain l wish drs understand my pain is real and not bullshit
I have the same thing and my son born with it also, I have to hide my pain from him, he even ask what are they but I think when he's old enough I will explain but living like this is not kool
Bobbins Lynn Amen!! 7 years so far with it, bullied for it, can’t always do day to day activities, in pain, confused easily.... ya it sucks. We get through it though, it makes us more special i think. Although lots of people think i fake most of it.... grrr
It's horrible when people ask you Ewww what are those bubbles on your skin?? They think it's contagious. Before they were even prominent kids in school would call me elephant boy... If they could only see me now!
@@richardstubbs8892 hi im nina from algeria i dont speack inglish well i have nf1 too i just beegen to devloped tumers im afaired do you have tumor in face do you removed them