Mom of three living with Neurofibromatosis
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- Опубліковано 21 жов 2018
- 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.
- Наука та технологія
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.
People who do not have it
Have NO clue how its feels to have it. I really have having it
Me too 😭
It sucks I’ve had it my whole life
I'm so sorry you have to live with it.
I also have it. 💜 I feel her and your pain.
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 hope when a cure is found that it's affordable.
mary jane there won't
@@annak4307 can u atleast br a little hopeful? Sheesh
Elijah Balza jeeez but it’s unlik
@@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.
Bless you mam. I live with NF1 too
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
I have nf 1,,,it made me cry
I understand your pain. Most of my tumors are under my skin but are very painful 😢. I have one the size of a baseball on my leg
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....
Exactly and when you do get the courage people ask what’s that or just stair and looking at other people’s skin like wow why can’t I have that
My dear dont cry plz .. im also suffering from this.. plz
Me too
I know the pain
My cousin has it, she got it from her mom
It’s heart breaking
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
I have it too..but I'm in Nigeria,it's hard, I always put on long clothes to cover it up,to avoid questions
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 .
Sir please where is your hospital in India or Hyderabad....
I’ve had this my whole life my mom and little brother and grandpa has it
my brother and sister had it, now my sister's daughter and granddaughter have it and they cut off my granddaughter's leg
I was diagnosed with NF1 at 5
I have this and has disfigured my back
I have nf1 i don’t have bumps over my body I have tumors and it’s likely for me to get cancerous
tumors
I have nf1 and I'm 13 and I know how it feels
@@Theking-mz9bk I'm so sorry for u
Same
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
I am ten and dealing with it only jusy hot out of hospital from brainbsurgreyvand brain swelled up so i had a seizure
I have it and everyday I cry
How many bubbles
Ik the pain I hate getting asked what is that
Please contact us, my husband has Nf and he has no support, only plastic surgery. We live in Dublin.
I wish there was a cure
Amin
My Newrofribama problem nurofr.. please madecin....
?please
Hate having it
i have neurofibrometosis before 14years do u have a any treatment
please reply me
I have NF1 i wish to cure my sakin im very confused at im i hate them i uwasg have a cure
My nurofriboma problem any treatment please sir please Ansar me 😭😢
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
buni davosi bormi 2 tip menda qulgimdi ichida sisish bor va hudi shunaqa
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
@@maymoramay2470 Is there a name for this process?
@@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
@@maymoramay2470 ok thanks. I'll look into it.
Please I a doctor to help me
i also have lived with this.
can we speak toghether
@@ninabournine4053 Sure, no problem, whenever you wish
@@ninabournine4053 stubbsrichard83@gmail.com
@@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
@@ninabournine4053 Yes i have on my face on my head, thousands all over my body.: You can email me if you wish
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!
I have NF and its sucks
I have neurofibromatosis also it sucks
Bobbins Lynn that’s my mom
Potato Fries really awesome she is beautiful I wish I could get mine removed
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
I truly feel for some I also have NF1 me and my brother.
Hospital address please sir
দোয়া করে এই রোগের চিকিৎসা
Im friends with the girl.
It can be cure
No cure
বের করেন
If you're parents r not this decease y you have this
Sometimes it's just a random mutation.