I have a wonderful surgical team that has successfully resected 3 large Schwannomas wreaking havoc on my body. I now would like to find a doctor who specializes in Schwannomas as to learn more about these tumors. Possible treatments before they become surgical.

Hey happy for u as it must have done a lot to dent ur confidence at such a young age? Have any other family members had it. Love from Liverpool England

Poor boy.😢

Inspiring!!!

How You gonna cost these in more than 10 thousands dollars...shame of You....the hell is wait in For you

WOW- wonderful! thank you for sharing

If there’s a chat room for people with this I would be very greatful if someone pointed me in the right direction

I’m not sure which one I have. I’m 26 yrs old and while I was visiting my dad we had a sit down conversation and he told me I’ve had this my whole life

You're More Than a Diagnosis kzbin.info/www/bejne/oYjRhWSAYthje80si=hU1aWDt6oDy_rB0Q

Big love from denmark have nf1 to

Ich komme aus Deutschland und würde bei dieser Studie gerne teilnehmen. Besteht da eine Möglichkeit?

Very good and inspirational.

Have nf to from denmark

❤❤❤

My son was born with a hearr defect and has been sick since he was 4 he just turned 8 and now he has over 15 cafe au lait spots in the last 6 months randomly. No doctor can explain whats going on. He stays so sick with fevers and his blood work is bad. No answers.

I have a dark patch with bumps on the left side of my chest, I can feel the tumours under the skin and it itches when it’s hot

Tyler Jacks showed progesterone receptor PR expression in neurofibromas. Both liganded PR and unliganded PR can contribute to tumorigenesis and tumor immune evasion. Arv471 degrades PR robustly as well as ESR1 I think maybe Arv471+mifepristone might synergize and possibly be an effective therapy for NF

I have nurofidroma it have medicine

Thanks Kim!!!

Can collagen supplement make nf1 worse since neurofibromas are in part made of collagen. I am an adult with nf1 and i am thinking about taking collagen pectydes but a bit worry about it

It seems to me that the safety objective should not be a secondary objective, but its own objective. So you would have Primary, Secondary, and Safety objectives, and then exploratory. The rationale for separating the safety objective into its own category is that patient safety is not secondary to efficacy, as should you have a drug that is effective, but lacks strong safety, would never be approved by regulatory agencies in the US and abroad.

That is so cool. I have neurofibromatosis and so does daughter.

Hi can you please answer i have this same In my brain what can do

i like koselugo voor may son , hier belgium 17000 euro voor 30 days !!!!!

I know this video is a couple of years old at least . But can someone explain to me more about NF1B

Keep on smiling. I have SMARCA4. I hope to have your optimism.

i read that L-Carnitine, LCitrulline, are great and my experience Creatine is awesome

My tibia bowed in my late 20's when living in Hawaii. Also have ringing in ears. Born legally blind 20/800 and had LASIK at 33. Now 62 with lumbar and cervical spondylosis with numb legs and feet. Mom had a large cafe on her cheek and died of multiple myeloma. I have lots of smaller ones. Advice.

Cobran por el registro

Any new treatment to take away skin tumors....😢😢😢

Good morning, I followed the live broadcast from Italy... thanks for the work you do for the NF community... I have some questions to ask... but I don't see the email address to send them to... I would be grateful if you posted the email address... thanks

I love children very much

I have had all these symptoms since I was little and will not go to treatment. I forget that I have this autoimmune disease and am super dead after work sometimes the pain is so bad that I can't get back up for a few hours or so and have to realign my ways of getting up because I choose to sleep on a hard floor so I can feel the most support.

I had a small mole on my shoulder for a long time. It did not hurt. I asked my family doctor to cut it off, he send the mold to the lab to test it. He then called me and told me that it’s Neurofibroma, incompletely excised and I should go see dermatologist. I’m worried is there any advice you can give me ? I would greatly appreciate it.

Do they offer this in texas around Dallas

Hi does L- arginine worsen neurofibromatose/ the lumps?

Yo donde lo meew registro

I lost my sister a couple of years ago to NF, but hers were internal

Everything Is Beautifulin Jesus namekeep on keeping the faithin due time it will be a curefor NF

I knew McKinnon in high school, amazing and strong and continuing to fight! Love seeing this!

What an honor! I'm loving your videos--can't wait to meet you in September! Heather from Lane Co.

I suffering too of the disease and I want seriously this to end. I’m tired physically and emotionally mentally. I can’t even imagine living with this disease 5 more years. Please I sincerely need help and hope

Awful sound!

Any cure?

Great job running. You are so much more than tumors. You run with all kinds of persons who love their bodies and prepare them for the run. Find strength in the way you love running. It keeps your body connected to so much more than tumors.

Hey so my son is going through the process now of getting diagnosed with nF2. Was wondering if i can email you with some questions and we can possibly talk about it.

Kudos to you Mam !!!

I am 59 I have NF type 1 the mental pain visual pain is more real any pain from NF it’s self.I can say that it sucks but loneliness sucks more .if you can remove this shit let me know with out drugs.

I have we cure it one day, Blessed Be.

I have NF1 not a lot of ppl know wat it is just hope one day one year there be a cure