Hi …nf2 here. Well, I’ve had 2 major surgeries so far. I was diagnosed with an acoustic neuroma when I was 33. They found it by accident when we were looking for other things ams I was asymptomatic really. The first surgery was to remove a meningioma on my t9 spine and it left me paraplegic for awhile and I had to go to acute rehab. I had a craniotomy in 2020. I also now have facial paralysis and this cosmetic labeling is nonsense. It’s dangerous not to be able to shut your eye. I can’t smell now and desperately written music while I have my hearing because one ear is pretty bad. I have bilateral acoustic neuromas. I just made a video about vitamin C but I’ll start discussing my experiences in depth because I know people need my story. Blessings 🙏🏻
Thanks for this video. I have NF2 and it’s very hard to deal with as it seems no one understands. I am learning more and more about this disease so I’ll look forward to more of your videos, as I’ve already subscribed! Thanks for caring about NF2!!! Be blessed.
Hi Latoya, thanks for your comment. Starting today we are launching another Tumor Talk series, and McKinnon (who lives with NF2) talks about her diagnosis. Next week she'll bring a guest on, who also has NF2, and three episodes are totally NF2 related. We hope you will watch and let us know what you think.
Thanks Angelina. Today we launched another season of Tumor Talk, and will have a number of episodes specific to NF2. Plus, Kate will be back with NF2 specific content this April!
My brother is NF patient. We know it since he's a baby. Currently he lost some strength to move his hand and leg because the tumor growing in his neck and hitting his spinal cord. Just in few months from March 2020 his condition get worsen time by time. Starting with cannot holding anything for long, can't write, can't eat properly, can't stand too long and now it's hard for him even to stand up. He will be going through a complicated surgery procedure to remove the tumor. I just hope the surgery will go well and he will get minimum side effect. Even though I know by time another tumor may grow again anywhere in his body but I pray it won't. I know he's strong and stronger than I've imagine. He's now 20 and I want him to have a good life...
Hi Kate, thanks so much for this helpful information. Both of my brothers have NF2 and schwanomatosis. Neither have ever had vestibular tumors. Both have MANY other tumors inside their bodies at this point. Both were diagnosed at least 10 years ago and both have had many surgeries to have tumors removed from their spines and many excruciatingly painful places. One brother is 48 years old (doctors say that the number of tumors in his body are “innumerable”…..so many they can’t even count them all ). and the other is 39. At this time he has far less tumors in number but there’s no way to know how bad it will become. I’m the oldest sibling, 50. I have some tumors but none that are painful (like the schwannomas, tumors in the nerves) or that my brothers have. Mine are near nerves and don’t seem to be in them. I’ve only had one tumor removed (from the parotid gland) so when I was 25 and am soon going to have another removed because it’s beginning to make it difficult to walk. I’ve never been tested for NF2, NF1 or schwannomatosis. Do you think it would be wise for me to get tested? For my children to get tested? I have one daughter who has a café ai lair spot and has learning disability. Could this be caused by NF? I have another son who has autism, auditory processing delay and extreme ADHD. Could this be caused by NF? I have another daughter who has severe sensory processing disorder which includes extreme pain that to me seems like nerve pain. Could these also be related to NF? In your video, you said to ask questions….I hope you’ll see mine….. is there an email address I should send this to? I’m hesitant to put my email here publicly. I’ll try to check back here soon to see if you’ve responded. Thanks in advance❤️🙏🏼😊
Thank you for this video, the disease is running in my family and I got diagnosed with it around two months ago. I couldn't really ask my doctors questions since they dont really know either, or bc i was im shook. Thank you, it helps me to feel better.
Im 15 and I have been diagnosed with NF2 since I was 1.5 years old. I have had over 40 surgeries and recently just had my first brain surgery on a vestibular tumor Because it was pressing on my brainstem. Sadly the surgery caused me to lose all my hearing, it’s really hard to deal with and I’m always sad.
I'm so sorry Celia. It is because of beautiful fighters like yourself that CTF is so committed to finding effective treatments and one a day cure for NF in all its forms. Please contact me via email if you ever have any questions. kkelts@ctf.org
My 62 yo brother was recently diagnosed with NF2 following 7 years of recurrent Meningiomas. I realize that his children should have genetic counseling, but am wondering if I or my children should also be tested. Thanks for the informative video.
I did not see this question last year, I apologize Anne! The best person to answer this question for your children is a genetic counselor. You can speak to their pediatrician or if they are adults they can speak with their primary care physicians to explain the family history and ask for a referral to a genetics clinic. I'm also happy to speak via email if you'd like a little more information on this. kkelts@ctf.org
I would be very interested to hear you talk about segmental or mosaic NF2/Schwannomatosis, the complications differentiating between the two and the impacts on having children.
These are very good and also very complex questions. We are currently working on a series of videos specifically about NF2. Please stay tuned for this!
hi , as a child i told i had nf2 , i have the spots on my skin , a lisch node in my right eye just above my pupil which actually looks like my pupil has a "slit" cut into it, and since my late teen years ive experienced slight hearing loss in my left ear however i always thought the hearing issue was due to my teen years being a lover of subwoofers in my car as my dad was a musician and handled the pa for all his gigs helped me setup tht correctly , but i always thought my left ear hearing was a result of tht . Im not so sure anymore. So as a child i was told i had nf2 but for the life of me i cant remember going for an mri or anything of the sort , i do recall lots and lots of doctors visits especially to hearing clinics and eye doctors. Im now 29 i go for my first eye checkup next week the first in prob 15 or more years. Most of my family doctors look at me like im a lying mental person when i mention nf2 to them .... like because i know of it and they dont that makes me a lesser person. Because of this is nearly impossible for me to get any further insight into this and whether or not i ACTUALLY have nf2, my father has passed n my mothers memory isent the best and she cant recall nearly any of it barely that she told me i had it as a child but does say she does remember telling me and some doctors visits but has no in depth details.. Is there someone i should see or talk to about this , i have a daughter and have noticed a few spots on her skin similar to mine and its raised my concerns in the last few years . Not the least because of ive seen sources tht i wont lie i cannot confirm but state life expectancy from 65 yrs , another says the average age of someone with nf2 is 36 .. any help would be great and im sorry for all the run ons and jumbled mess that this comment is.
Hello, thank you for your comment and for watching Ask Kate. If you believe you may have NF2 I would encourage you to seek out a physician who understands the condition and how it may impact your health. You can email me directly if you'd like help finding someone: kkelts@ctf.org or you can visit our website: www.ctf.org/understanding-nf/find-a-doctor
I can tell you my experience. I was diagnosed at 2 as well. I was fortunate to work Dr John Carey as a child. All I had were sizeable spots. I grew up thinking I would get spots. Or fibromas. I was a mutation, and they called me an "atypical case." I had five children, and none of them had NF. Statistically speaking, that's next to impossible. I got my first fibroma while I was pregnant with my fourth child. I thought it was a skin tag from damaged skin on a stretch mark. I had it removed at 35 and it was tested. That was the first, solid proof I had more than freckles... 5 years later, I am almost 40 with a fibroma on the root of my cervical and thoracic nerves, and my arms go numb and burn. My lesson the hard way... Be nice to your body and the more hormone washes and huge fluctuations, the more your chances of the disease starting to flare. I wouldn't trade my babies for the world, though.
I'm 32, have on my brain, behind my eyes. My spinal cord, stomagh, legs and arms are full. For some reason mine doesn't grow slow as they say it's a slow growing tumer. Mine grows very fast and every other day I feel a new one. I'm constantly in pain and nothing works.
@@medschool3599 about the same thanks, in Jan next year I'm going in for surgery to remove one from the brain, never that leads to the brain and one in on my spinal cord.
Thank you Kate!!! I have NF2- just found out after siezures and Covid 2020 - uggh.. I'm doing better.. I would love to speak to you- SO much to ask and share and need advice please!
My 13 year old son is going through nf2 now he is in radiation treatment no the Dr don't think it will work but they want to try anyway. They cut his head open a year ago now it is growing out of control he is trying to stay strong I don't know what me and his mother is going to do I am disabled and she got laid off the week we found out he was to start radiation I am trying to sell everything I have to get us a car even started a GoFundMe nothing is selling know one is donating
I have a 10 year old grandson with NF2 and I need more information to fully understand it. My son and the child's mother don't seem to want to discuss it at all.
Thanks Anita! Here is a digital copy of our NF2 Newly Diagnosed brochure. We hope this helps: www.ctf.org/images/uploads/CTF-NF_Newly_Diagnosed_NF2-FINAL-Single_Pages.pdf
Hassan Abo Taleb I’m sorry this happened. I also did the gamma knife radiation and suffered major hearing loss on the left side. I, too, have bilateral as well. This is sad but I trust God will heal us and keep us. In Jesus name.🙏🏽🙏🏽🙏🏽
@@TeeGlass this's exactly what happened with me; loss of hearing on the left side then loss of hearing on the right side after the next operation May God heal you and us, we're nothing without His mercy.
Hassan Abo Taleb the radiation made me too sick, so I didn’t go for any more treatments after that...and you’re so right, we are nothing without His mercy! I’m keeping you in my thoughts and prayers. It’s somewhat comforting being able to communicate with someone who can relate. I’m so thankful for these videos and comments forum. 🙏🏽🙏🏽
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.
We encourage you to see a doctor local to you with your specific question about your symptom. In the meantime, you can learn more about NF2 at www.ctf.org/nf2
This is not a ridiculous idea at all. Many people are asking if, when, there might be a cure for conditions like NF2 and Gene Therapy is a very hot topic. At this point we are in the very early stages of understanding how gene therapy might be a pathway to a cure for NF2, and CTF is committed to continuing to raise awareness and money to support this important research.
Hi there I have just watch your video kate and I just wanted to know some basic question of you my daughter who is 6 as been diagnosed with nf2 and I am very worried about her health
Hi Carlos - please have a look at an older video from our 2015 about Hearing Loss. It is at the link below. Please reach out again if you have further questions! ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-1wK7-quh8Lk.html
Hello - what I mean by that specifically is that you cannot be a carrier of the NF2 gene variant. In some genetically inherited conditions, a person can carry a variant but not be impacted by the condition for several reasons. The genetics of NF2 are very complex, I'd encourage you to speak with a genetic counselor.
Hi Kate. My maternal grandmother who had a large brain tumour removed ~17 years ago, on her optic nerve. I do not know exactly what the name of her tumour was. My maternal aunt, has just been diagnosed with a (what they called) acoustic neuroma on her right side. Now, I thought that this was oddly coincidental. I also have 3 sisters, one of which has multiple physical, and learning disabilities. She had a genetic test done as a young child after her first seizures (at 6 months old), which showed a deletion in her 22 chromosome (specifically, 22q12.2, if I'm not mistaken). She also was diagnosed with a part of her brain that was "never developed in utero", at a very young age... and this, with some "abnormal brain tissue" is what we have been told was causing her to seize. I guess my question is, is it possible to inherit NF2 from a parent who possibly has NF1? From what I've read on CTF about NF2, is that certain symptoms are more associated with NF1 (grandmother: tumour on optic nerve, lisch nodules--which we always thought were pretty, freckles of the eye), but my aunt who has an acoustic neuroma would be more so leaning towards NF2? My mother, also has developed cafe-au-lait spots in her face in the past ~10 years, but has one on her leg, and one on her stomach. Two of my sisters also have multiple cafe-au-lait spots, and I have a first maternal cousin who was born with acute spinabifida and scoliosis. So, I guess my question is.. Should I call my doctor? Lol
Hello Tristen, this is a very interesting story. Genetics are very complex and while it would be nice to say there is a straightforward answer here or a simple way to understand how the genetics of NF work there generally isn't. I can say that no, you cannot inherit NF2 from a parent with NF1. These would be considered spontaneous mutations within the same family. My opinion is that given the complexity of your family history that making an appointment to see a Genetic Counselor would be a great idea. They can walk through everything you know about your family's medical history and help identify whether any further testing would be necessary for you. Of course email me if you have any questions: kkelts@ctf.org
I really want to know whats wrong with me, I have muscles loss , tinnitus , balance problems and severe back pain near or on the spine. I had a ct scan and they said I have no cancer. this got really bad around about 6 months ago i'm 29.
Hi Christopher. I'd like to recommend that you ask for a referral to an NF center of care. You can read about our NF Clinic Network, and search for a clinic near you, on our website here: www.ctf.org/understanding-nf/find-a-doctor You are also welcome to contact me directly if I can be of help. kkelts@ctforg
Me da miedo leer los comentarios y las secuelas de cada uno, yo lo herede de mi padre que murió hace 3 años con 67 años. Lo siento por no hablar más, tengo mucho miedo, solo sueño con que la medicina avance y nos pueda ayudar. Tengo videos de mis operaciones y tratamientos en mi canal. Un fuerte abrazo a todos. Ánimo campeones y campeonas❤
Do NF 2 patients have cutaneous and subcutaneous neurofibromas on the body like NF 1 patients. And if so do they differ in appearance? And I haven't been able to find a definitive answer on this one..... can someone have NF 1 & 2..... or only one or the other??
Hi Blake, great questions. Individuals living NF2 do not develop cutaneous or subcutaneous Neurofibromas. NF1 & NF2 are completely separate conditions and you would not have both. You also cannot develop one because you have the other. They are caused by different genetic variants. Please email me if you have further questions: kkelts@ctf.org I am happy to help!
Hello, my husband was born with a plexiform schwannoma on his left foot, 35 years later he made a mri with a result of a calcified meningioma and no other tumor in spine and brain, now he is under genetic studies, may he is a nf2? We have two childrens, the little one has two small caffe au lait spots, may this be a sign of nf2? Please im very concern
Hello I believe I have nf2 it's is genetic in my family my grandma is the carrier and my uncle has bees diagnosed with nf1 but all my life I have been told up until now that I can't get it because it skips a generation. However I have been suffering all my life with different health issues. My grandma brought this to my attention a few days ago. And I have had every symptom of nf2 all my life. I spent a few days trying to find some one who could test me much less know anything about nf2. I need help and don't know where to turn. I just need answers. I need to know do I have this or not and also my son because I believe he has it to everything that was happening to me as a child is happening to him. Thank you felicia
Hi Felicia - thanks for this. If you'd like to reach out to Kate directly, email her at kkelts@ctf.org In the meantime, you can read more about NF2 at this link: www.ctf.org/understanding-nf/nf2
Hello, thank you for your question. This is not a question I can answer based on this information. You are welcome to email me directly if you'd like to discuss this further: kkelts@ctf.org
Hi Kristin, the best answer I can give is that meningiomas are extremely rare in NF1, and much more common in NF2. If you have questions about that please ask!
Hello, if I understand correctly: your paternal grandfather has NF2. Your father and brother do not. Typically NF2 is autosomal dominant - this means that if you have the genetic variant then you have NF2 - it does not skip generations and you cannot be a "carrier" for the condition. The genetics of NF2 are highly complex, however, and if you are concerned I recommend speaking your doctor.
Please have a look at an older video from our 2015 about Hearing Loss. It is at the link below. Please reach out again if you have further questions. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-1wK7-quh8Lk.html
My grandmother and both uncles and a cousin have this. My father her son and brother to the other two did not have it. How does that work. Can I be a carrier?
Hello Heidi - no, you cannot be a carrier for NF2. If you have the condition, then you have NF2 - it sounds like your Father did not inherit the genetic variant that causes NF2 which means he cannot pass it on to you. Again, I will say that genetics are complex and if you have any concerns you should speak with your doctor.
I Strongly believe that I have NF2. I need help getting diagnosed. My father had a brain stem tumor and tumors in his brain and cysts and tumors on his insides. Please let me know how I can get diagnosed and affordably..
Hello Laura, thank you for watching and for your question. If you email me directly I can help you find a provider near you. My email is kkelts@ctf.org
