The Johns Hopkins Comprehensive Neurofibromatosis Center

Рет қаралды 21,652

6 жыл бұрын

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

Пікірлер: 75

@16jbelle 5 жыл бұрын

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.

@Laurie03 6 жыл бұрын

These doctors are amazing!

@sunset2876 5 жыл бұрын

I like everything they said. And I also like coffee! ☕ 😀

@natashacobbett9737 5 жыл бұрын

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.

@notsure4108 4 жыл бұрын

Im From Georgia and gave the same issue here.

@wilyceyote 4 жыл бұрын

I was diagnosed NF1 over 25 years ago back then there was only a few places it test for it

@Preppergirl10 3 жыл бұрын

My bf doesn't trust doctors anymore and he needs someone who understands him!

@Jets1997 5 жыл бұрын

I have Nf 1. And there's no one around my area who don't know about it

@dangdebayme6806 4 жыл бұрын

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?

@lynnbraben76 5 жыл бұрын

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

@nancycampbell9554 5 жыл бұрын

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

@kusumpahwa55 5 жыл бұрын

I am suffering from dis is any treatment for dis disease.plz help

@vickisanders5435 3 жыл бұрын

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!!

@jeankoehler 3 жыл бұрын

I recall this issue too… but once you get in, Dr Blakely and Shannon are the best!

@miaesquero4177 4 жыл бұрын

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.

@gemini0074 2 жыл бұрын

Hello Mia, I too have Schwannomatosis. Spinal tumors. Have you had any luck?

@miaesquero4177 2 жыл бұрын

@@gemini0074 Recently I had a spinal tumor and had it removed.

@gemini0074 2 жыл бұрын

@@miaesquero4177 I’ve had 2 of 9 spinal tumors removed. But they grew back in same spot after 8 years.

@CudaBarr-mt2kj 11 ай бұрын

It really sucks to have very painfull

@BapiDas-ik3lt 5 жыл бұрын

Hi I am also suffering from nf 2 can anybody help me I'm from india

@yvonnelifevlogandtips4211 3 жыл бұрын

I have nf 1

@melisaacademia2703 5 жыл бұрын

I also have NF

@dangdebayme6806 4 жыл бұрын

Like wise.

@TheTarrMan 5 жыл бұрын

Sounds expensive. . . . . I have a headache.

@randyugly1237 3 жыл бұрын

They will upsell you to other departments, dont beleieve the hype

@dandee6604 4 жыл бұрын

So it's preventable, as in don't pass on the genes?

@jedi1784 4 жыл бұрын

its genetic

@dandee6604 4 жыл бұрын

@@jedi1784 so don't reproduce.

@TravelingBibliophile 4 жыл бұрын

@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.

@AboutthatMommyLife 3 жыл бұрын

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

@cartconrad4426 5 жыл бұрын

Can neurofibromatosis cause chronic pain

@JohnsHopkinsMedicine 5 жыл бұрын

Hi Cart, you can learn more here: www.hopkinsmedicine.org/healthlibrary/conditions/adult/orthopaedic_disorders/neurofibromatosis_22,neurofibromatosis

@natelao7392 5 жыл бұрын

Cart Conrad yes

@gemini0074 2 жыл бұрын

Absolutely! I have chronic pain 24/7. Sadly.

@juanmosqueda3015 Жыл бұрын

Can NF cause extreme depression ??

@kwekbeebee3794 4 жыл бұрын

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?

@susanruth2669 5 жыл бұрын

i am a patient of nenrofibromastosis desease. i got it through blood transfusion

@thelittleunicorn1878 5 жыл бұрын

You can't get it through a blood transfusion, that is impossible. It is a genetic disorder, hence you must be born with it.

@sussanabatetabe7725 5 жыл бұрын

My mother told me that .

@sussanabatetabe7725 5 жыл бұрын

She said when I was a baby she transmitted blood to me.

@natelao7392 5 жыл бұрын

SUSAN RUTH that’s not even possible

@ireland4146 5 жыл бұрын

True I have it