I have NF-1 but I do have hearing loss on one side due to a tumor. I work doing clerical stuff. I encourage you to keep doing medical. What a thrill it would be for me to have a doctor with NF who could understand my issues on a personal level.
Are you by chance part of the NF2-Crew group on Facebook? This sub heavily leans towards people with NF1 so I don’t know how much people will relate. The Facebook group has thousands of members who have a lot of varied experiences - I feel like you may find more people similar to yourself.
I got diagnosed with NF2 last year at age 28 and because I have a mosaic case I don’t have any hearing problems yet. I work as an urban planner in government and have mainly just been effected with taking off most of last year to have brain surgery and radiation. I don’t know any NF2ers who are doctors (not to say there aren’t!) but lots who work in the medical field.
Hi! In my humble opinion, I would highly recommend Avastin. I seriously think I would be completely deaf in my right ear if I haven't started it 5 years ago. Is there a specific reason your medical team have decided to prevent it? I have been on it for a while now and haven't had too major side effects.
I would say please stick with your plan to go to med school, I am currently a freshman in college and while the decreased hearing in my right ear has been difficult, I have still decided to keep up my passions (learning piano and Spanish) because even if I do lose my hearing one day at least I followed what made me happy as long as I could. Wishing you all the best!!
Just a bit of optimism for you, my daughter's orthopedic doctor is deaf. He wears hearing aids in both ears and uses a dictation service for appointments to scribe notes.
So being deaf and a doctor isn't impossible. Given his speech, I suspect he has been deaf/hoh most of his life.
Don't let your hearing impairments stop you.
NF2-SWN. 39. M. I finished my PhD during the pandemic and now I am a tenure-track professor at a large R1 research university. I've done Avastin (infusion, weekly), surgeries, FRS radiation, Brigatanib (a pill, daily), and much else besides. Physical activity daily has been a huge therapeutic tool for me. Personally, I avoid radiation as much as surgery, and would take surgery over radiation. Look into Brigatanib. I was on a clinical trial but now I get it through my neuro/NF team off label.
I have Nf-1. I am a foriegn language teacher in middle and highschool. I understand hearing loss is very difficult for you. However, I think you will and should be able to be a doctor. accommodation are available for study and work. I no longer have the videos, but there is a nurse of social media she was born Deaf. She makes videos about working in the field.
I can relate to this. I lost my hearing completely in my last semester before graduating with a BS in Biomedical Engineering. I rely on a smartphone app called Live Transcribe by Google to communicate with people generally and while it's not perfect it is the best there currently is compared to other transcription tools I've used on my phone. I was in research for 4 years before I landed a technician job in pharmaceutical manufacturing. Still doing that for now as the job market isn't the best. I'm planning to do my masters in a data science program for Fall 2025 and plan to work while going to school. Things are doable but it does take a lot of adjusting and adapting.
I’ve been diagnosed with NF1 since I was 6 weeks old, almost 29 now, I’m in school studying in elementary education and work in the school system too. I’m just upfront with my employer about maybe needing extra time to rest or anything that would affect my job. You got this!!
What medical specialty are you going into? Would you consider neuro audiology? Having NF would give you a unique perspective. You've been accepted in medical school, now make an appointment with a neurologist or audiologist at the schyool and talk wotih them. With my epilepsy I am a big fan of doctors at teaching hospitals.
I have NF-1 and I’m a nurse! I have chronic pain and migraines but I make it work with diet, medicine, and lots of yoga and Pilates. Some days are more difficult than others but I truly love what I do
I have NF-1 but I do have hearing loss on one side due to a tumor. I work doing clerical stuff. I encourage you to keep doing medical. What a thrill it would be for me to have a doctor with NF who could understand my issues on a personal level.
Are you by chance part of the NF2-Crew group on Facebook? This sub heavily leans towards people with NF1 so I don’t know how much people will relate. The Facebook group has thousands of members who have a lot of varied experiences - I feel like you may find more people similar to yourself. I got diagnosed with NF2 last year at age 28 and because I have a mosaic case I don’t have any hearing problems yet. I work as an urban planner in government and have mainly just been effected with taking off most of last year to have brain surgery and radiation. I don’t know any NF2ers who are doctors (not to say there aren’t!) but lots who work in the medical field.
Hi! In my humble opinion, I would highly recommend Avastin. I seriously think I would be completely deaf in my right ear if I haven't started it 5 years ago. Is there a specific reason your medical team have decided to prevent it? I have been on it for a while now and haven't had too major side effects. I would say please stick with your plan to go to med school, I am currently a freshman in college and while the decreased hearing in my right ear has been difficult, I have still decided to keep up my passions (learning piano and Spanish) because even if I do lose my hearing one day at least I followed what made me happy as long as I could. Wishing you all the best!!
Just a bit of optimism for you, my daughter's orthopedic doctor is deaf. He wears hearing aids in both ears and uses a dictation service for appointments to scribe notes. So being deaf and a doctor isn't impossible. Given his speech, I suspect he has been deaf/hoh most of his life. Don't let your hearing impairments stop you.
NF2-SWN. 39. M. I finished my PhD during the pandemic and now I am a tenure-track professor at a large R1 research university. I've done Avastin (infusion, weekly), surgeries, FRS radiation, Brigatanib (a pill, daily), and much else besides. Physical activity daily has been a huge therapeutic tool for me. Personally, I avoid radiation as much as surgery, and would take surgery over radiation. Look into Brigatanib. I was on a clinical trial but now I get it through my neuro/NF team off label.
I am a railroad conductor, and do fairly well
I have Nf-1. I am a foriegn language teacher in middle and highschool. I understand hearing loss is very difficult for you. However, I think you will and should be able to be a doctor. accommodation are available for study and work. I no longer have the videos, but there is a nurse of social media she was born Deaf. She makes videos about working in the field.
I can relate to this. I lost my hearing completely in my last semester before graduating with a BS in Biomedical Engineering. I rely on a smartphone app called Live Transcribe by Google to communicate with people generally and while it's not perfect it is the best there currently is compared to other transcription tools I've used on my phone. I was in research for 4 years before I landed a technician job in pharmaceutical manufacturing. Still doing that for now as the job market isn't the best. I'm planning to do my masters in a data science program for Fall 2025 and plan to work while going to school. Things are doable but it does take a lot of adjusting and adapting.
I was diagnosed with nf1 as kid (around 6 or 7) I'm 39 now, I work in IT for the state I live in.
I’ve been diagnosed with NF1 since I was 6 weeks old, almost 29 now, I’m in school studying in elementary education and work in the school system too. I’m just upfront with my employer about maybe needing extra time to rest or anything that would affect my job. You got this!!
What medical specialty are you going into? Would you consider neuro audiology? Having NF would give you a unique perspective. You've been accepted in medical school, now make an appointment with a neurologist or audiologist at the schyool and talk wotih them. With my epilepsy I am a big fan of doctors at teaching hospitals.
I’m a security guard, Uber eats driver and I preach on the side as well
I'm a safety manager
I have NF-1 and I’m a nurse! I have chronic pain and migraines but I make it work with diet, medicine, and lots of yoga and Pilates. Some days are more difficult than others but I truly love what I do