The Johns Hopkins Comprehensive Neurofibromatosis Center
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- Опубліковано 6 лис 2017
- The Johns Hopkins Comprehensive Neurofibromatosis Center is one of only a handful of centers in the world helping patients with neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2) and schwannomatosis. Learn how this multidisciplinary team of world experts treats patients with this syndrome across their lifespan. For more information: hopkinsmedicine.org/neuro/NF
- Наука та технологія
Thank you guys for everything you do. I flew in a few years ago as the doctors I have met with locally over the last 18 years since being diagnosed, weren’t familiar with NF. You guys are making huge strides and I know all of your patients are SO very thankful for all that you do.
These doctors are amazing!
I like everything they said. And I also like coffee! ☕ 😀
I was diagnosed NF1 over 25 years ago back then there was only a few places it test for it
I have nf 1 and I have yet to find a doctor who truly understand what I go through to help me. I am from South Carolina.
Im From Georgia and gave the same issue here.
My bf doesn't trust doctors anymore and he needs someone who understands him!
Nf 1 is such a cruel disease. I wouldn't wish it on my worst enemy. Because there is no part of your body unaffected, it is like living with a time bomb balanced on a Buckaroo! Horrible, painful, ugly and unpredictable. Wish I lived near Johns Hopkins
i feel you i have nf yeap it sucks all the bumps cysts and people beging cruel the brown spots dont really bother me i just wish rest my skin was that color
Hello there. I am an NF1 patient living here in Italy. I have a lot of small nodules and lait n cafe sorounding my body. It's a little bit visible. I have lot of pains that starts from my feet to hands a d arms. since 2011 i am taking pain killer which is Lyrica 75mg. But pain still there. What shall i do?
I am suffering from dis is any treatment for dis disease.plz help
I have Nf 1. And there's no one around my area who don't know about it
It really sucks to have very painfull
I was diagnosed with Schwannomatosis about a year ago (found out about it the hard way) and my doctor didn’t really know much about it.
Hello Mia, I too have Schwannomatosis. Spinal tumors. Have you had any luck?
@@gemini0074 Recently I had a spinal tumor and had it removed.
@@miaesquero4177 I’ve had 2 of 9 spinal tumors removed. But they grew back in same spot after 8 years.
I also have NF
Like wise.
Trying to schedule an appointment with the NF Clinic at John’s Hopkins is a nightmare. You cannot speak to a live person. It’s ridiculous!!
I recall this issue too… but once you get in, Dr Blakely and Shannon are the best!
I have nf 1
I also have NF1..now will grow a grain from my cafe’a ...will continue grow it?some time it will shot pain on my back and armpit...it also will causes headache?now I also have high blood pressure..now start take medicine....should I tell my doc when appointment time?
Hi I am also suffering from nf 2 can anybody help me I'm from india
Can NF cause extreme depression ??
So it's preventable, as in don't pass on the genes?
its genetic
@@jedi1784 so don't reproduce.
@Bobby Dennis while it is usually determined to be genetic but there are cases where neither parents have it. From what I understand it isn’t recessive like being a redhead. If you get it genetically it has to come from either your mum or dad.
It’s not always genetic. Some cases are caused by a gene mutation. If a person has NF they have a 50/50 chance of passing it on to their child
Can neurofibromatosis cause chronic pain
Hi Cart, you can learn more here: www.hopkinsmedicine.org/healthlibrary/conditions/adult/orthopaedic_disorders/neurofibromatosis_22,neurofibromatosis
Cart Conrad yes
Absolutely! I have chronic pain 24/7. Sadly.
Sounds expensive. . . . . I have a headache.
They will upsell you to other departments, dont beleieve the hype
i am a patient of nenrofibromastosis desease. i got it through blood transfusion
You can't get it through a blood transfusion, that is impossible. It is a genetic disorder, hence you must be born with it.
My mother told me that .
She said when I was a baby she transmitted blood to me.
SUSAN RUTH that’s not even possible
True I have it
I am also suffering from nf1 and nf2 plz help
Ap dvai leti ho is ki
Muje bhi he nf.1
M boy hu yr
Ap ko nf 1 h ya 2 bhi h
@@seemadudharejiya1749 suno batana me ko
Apki age KY h
Help me please
Hi, thank you for reaching out to us. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Enaku intha pathippu irukku ennoda child ku vara
enna problem NF1 or NF2
My Newrofribama problem titmant please help me
Hi, Thank you for reaching out to us. We’re very sorry to hear about what you’re going through.
If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.
Pls help me. I am neurofibroma. I am kerala😥
Hi bro am also from Kerala pls give a reply