Understanding the NF1 Diagnostic Criteria Update
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- čas přidán 9. 07. 2024
- In this video, you will hear from Dr. Dave Viskochil, Director of the University of Utah NF Clinic, and Dr. Kaleb Yohay, the NYU Langone NF Clinic director, presenting the recent changes to the diagnostic criteria for neurofibromatosis type 1 (NF1). Alwyn Dias, a young father, husband, and professional living with NF1, joins the discussion with insightful questions that will help us better understand how these changes may impact those living with NF1. Our sincerest thanks to each of our participants; please send any comments or questions to CTF Patient Support Coordinator Kate Kelts at kkelts@ctf.org
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Hello! Since Childhood in the 1980’s, I’ve been a patient to Doctors…Vincent Riccardi, John Kerry, then Dave Viskochil. All great men that have helped treat my NF1. I’m currently 45 and have started developing issues that have drained my life from a massive tumor in my chest. I’m hoping Dr Viskochil catches word. Thank you for such a informative video. 👍
I just found this site.. read your comment...I know it's been 2 months ago but I wanted to respond and ask how you are doing? I do not know you but I care.. I have NF1..
Me as well! I was one of Dr Careys patients for years. There was so much pediatric support and then nothing. I don't know what to do.
Thanks for this forum my son has more than 10 café about his body,lisch nodules,pseudarthrosis on his right arm recently diagnosed with slight scoliosis and having learning challenges in school ,it's hard at times but information like these are a great help to myself and family. I'm trying daily to raise awareness to my community some persons are just ignorant of wanting to know anything about his challenges we just share talk and talk ,thanks for this ,ps he was born at birth with all the signs only at about 3 years old just had a gut feeling something was wrong with my son went to a private institution and met some great Dr.s that was visiting from Canada , saw him and then our journey started... Of dr visits and so on...
My mom help start it in Missouri in the 80’s
Hi Dr Kate, my 8 year old daughter has NF1 pathologic variant confirmed on genetic test, she has recent advancement of thoracic-lumbar scoliosis at Cobb angle of 64 degree from previous 47 deg 6 months interval. Would she benefit from Boston or WCR brace and physical therapy while we await surgical consult on VBT or MAGEC options from Rady’s hospital in SD. Thank you for your advice!
I have NF1...this will be long but if anyone can relate to some of these, you'd be the first ones. I was diagnosis at 24 yrs old. I am In my 50's. I have every one of these diagnosis..except I only had one cafe spot. No freckling.. I had severe headaches,
seizures and delay in menstrual. 14 years old. Also growing up and I would have 1 or 2 menstruals a year.
My tumors started on my forehead at 11 years old.. back then then thought it calcium deposits. Seizures they thought where epilepsy. Not.. then I had my tumors removed at 24.. they came back at 26.. at 47 tumors started to change shape.. pain was unbearable. Moved to have surgery at OHSU for Malignant Peripheral Sheath Tumor Cancer. Thining of my skull.. anurisum etc. Have an appointment this month at OHSU.. great Drs! Dr Gross and his team saved my life..
Herpes virus. You need the herbal remedy that kills herpes virus in active and dormant state.
My 14 year old has NF1 she's had 4 surgery they removed just percentage of her tumors..but I wish her doctor that Diagnosed her would have gave me a little bit more information when she 1st was diagnosed at the age of 4 . Now that I been reading on NF1 ..I can understand why my babygirl struggles at school with reading and math , her rapid , curvature of her spin, Sudden movement ..flashing lights and then her vision goes black..her burst of anger out of nowhere, fast rapid heart rate ..she feels like her heart is in her throat..then 2 weeks ago she had her first Seizure..
I did not know anything about NF1 . my baby girl had her first seizure 2 weeks ago
So that's when I decided to look into getting information about NF1 .
I feels like a terrible parent 😪 I should have looked into this when she was first diagnosed..but the doctor that Diagnosed her said oh she will be fine. He said... she would out grow it. So far it has been getting worse with time ...all the signs have been there since she was born and continue with age ..
now at the age of 14 her first Seizure...Please pray for my babygirl ...
Hello thank you very much for all of this great updated diagnostic topics! Our son is 11 yrs old and was diagnosed at age 8.5 yrs old! We are spontaneous mutation of the NF1 gene! My husband and I both do NOT have nor, have we ever heard of NF until today ! So my question pertains to the ending part of this video…., Where with internal tumors and not any signs of surfaced tumors/ neurofibromas on the Skin and with pain or learning disabilities, that this may be not only a NF 1 genetic mutation but 15 more others? How can we be sure to help our son and of course us as the parents have more clear of an understanding of our sons path and future possible issues that we can be aware of to help be sure to seek any and all medical service if needed !
Suggestion from a 41 year old woman with NF1.
Pediatric support for NF is amazing. You have to start looking now for adult support. There are no docs that work with the adults. No specialized medicine. No teams. Push to help him find it before he goes out on his own.
So NF1 Runs in my family my Grandpa had it my mom has it I have it and recently my four-year-old daughter just got diagnosed with it she's had headaches dsuly sore back n legs but would love to talk tona Dr who deals with NF I don't know to much shout even though I have it
HI Dr. Yohay. My daughter is your patient- her name is Marie, she has been a patient of yours for about 3 or 4 years now. Nice to see you here. I have a question, should she get the genetic testing? We know she has it, but does genetic testing help know more about how it will develop? or no?
Thank you Brenda, that is a great question. NF researchers are working on that now and looking for ways to predict the way symptoms will develop.
My son is 2.8 year old ... he has nearly 5 cafe au lait mark of diagnostic criteria rest are small.one small brown mark in his face which turns red and big sometimes then come back to normal which dermatologist said is urticaria pigmentos.his genetic testing i.e whole exome sequencing came back normal..neurologist said no need to worry and no follow up needed but I m still worried..I just want to know whether genetic testing is 100%
This sound very similar to my son, though we haven’t had the genetic testing yet. It’s scheduled for next year in June. How is your son now? Do you know for sure that he hasn’t got nf1? Well wishes x
Why are naturopathic doctors never invited to these tumor panels? Big mistake.