Neurofibromatosis - MBNF - PSA
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- čas přidán 25. 10. 2011
- Neurofibromatosis affects 1 in 3000 people, there is no cure - but there is help. MBNF provides confidential support and distributes information about NF to members, families, health care professionals, and various organizations. We host a variety of fundraising events and group get-togethers to support those living with neurofibromatosis. We continually look for ways to advance the awareness of NF.
MBNF - "New Friends make the difference."
mbnf.ca/
Hi. I am 27 and I have NF. And it sucks. To everyone out there with NF, you are not alone. Stay strong.
Hi Daniel. I watch my teenage son deal with NF issues and dislike it very much too.
I'm so thankful we are not alone! I also think people with NF are very strong and inspire me every day!
Thanks for watching our video and sharing your comments.
I'm also 27 and have neurofibromatosis, I was diagnosed at the age of 3.
You spoke to my heart thank You. 💖💖👏🙌
I'm 34 with NF type one. You stay strong too!
Hi all! I am 32 and have nF2 and it does suck and it’s even worse that no one understands because it’s not a “popular” or common disease. I pray you all be blessed as we are on this journey together!!! Thanks for the encouraging words from everyone to everyone! ❤️
I have Neurofibromatosis. I have had the Cafe Au Lait spots since I was born and have the Lisch Nodules as well. I also had the learning disability that came with it. I fortunately grew out of that. I go every other year to have an MRI of my optic nerves and my head, because I was told when I was very young that the Lisch Nodules COULD grow and become dangerous. So far so good. My sight however is getting worse each year. I am currently 27 and turning 28 years old this year. I am so glad there is more awareness of this, because its not easy at times to live with. Thank you for sharing!
+jennaisRADICAL I am happy to hear your health has been great. Having annual check ups is a great idea. The lisch nodules themselves are not truly a concern, and usually after your childhood years, optic gliomos are less frequent to appear. Yes, the NF awareness has a long way to go to be in the forefront of genetic disorders, but is increasing at a steady pace! Yay!
jennaisRADICAL i also have nf and cafe au and learning disability and i try to not cry I'm going throw this pain .
Iam have nf I'm from indonesia
I dont belıeve like me find girl. We are different. And diffrent always beautiful
I have NF too. As I'm growing up, I experienced bullying, discrimination and such. But that didn't stop me from chasing my dreams. It motivated me more. I learned to accepted it. My family and friends loved me for who I am. :)
Victoria Quevada You sound like a lovely and inspiring young lady! I'm sure you are very loved:)
I feel you.
Ryan Boyer Hoping you are doing well Ryan.
Ya sadly around the time I wax in 5th grade I got used to the bullying
Victoria Quevada stay strong x
I have NF1. Because of the disorder, I suffered from cancer. My family was shocked and we couldn't believe that I was sick. Having cancer from NF1 happens rarely, but I just happened to one of the people that had cancer. I am four years cancer free and I cannot be anymore happier, but the worry and anxiety from other tumors are a daily activity. I'm scared daily because of my body and what it could do to me because of my disorder but knowing that there are others out there that just like me gives me hope and keeps pushing me forward. Much love.
+TheMaddiet123 Wow, you sound very strong! Yay to 4 years cancer free, I'm so happy for you and your family.
I believe as you do, the support of our NF family is crucial. We gain strength wisdom and hope from each other. We learn to be better advocates for this disorder, and continue to work towards a cure. I know it's hard, but I'm sure you also know...worry gets us no where. Enjoy each day, we only are given enough strength and ability for one day at a time. It's when we plan or think beyond, that the anxiety creeps in;). (Tracy)
+Manitoba Neurofibromatosis Truer words have never been spoken.;) Thank you so much for your support.:)
Hello, I am 41 years old & have been diagnosed with NF1 at the age of 7. We have two options. 1. Accept it and be happy. 2. Cry over it & ruin our life. We have to opt for the better one.
I'm late to the post here. I too have NF and I'm 62 . To all these beautiful kids be strong and stay positive. God Bless You.
The kids in this video are all doing well. Thank you for your prayers. Much appreciated.
NF made me be blind in my left eye, I am still glad that's all I have..
weird did for me too. But I also have optic pathway glioma
What’s up y’all. I’m Rob, 30 and got diagnosed with NF1 mild case in outer appearance. But biggest impact was in learning difficulty’s in school. Was in a special ed pre school through high school. as well as vision. I graduated high school 11 years ago. I’m writing a book. Anyone who struggles with NF. Find something you love to do and do. If you love what you do, do your absolute best, and enjoy it. NF won’t hold you down.
Robert VanderMay It’s nice to hear from you. The learning difficulties are often associated with executive functioning, but can be manageable. It’s great to you are doing something you love! Thanks for the encouragement!
I have NF2 and I’m honestly shocked that so many other people have it... I’m glad I’m not alone.
My name is Davor and I have NF1.
I am 33, was diagnosed when I was 5.
I just want to say hello to all my hero friends :)
Hello, thanks for saying hi!
I have NF type 1. Diagnosed at 2. Hope everything is going well for you. Stay strong.
Hello to all my unique friends we are special people and we have something no-one else has isn't that wonderful that people are jealous that we have something that they don't have Yea♥️🎀🙏😝🎀🎀🎀🎀🎀👍
Hi..
I am now a 13 year old girl who fights NF1 and I'm staying strong! God Bless you all!
Awesome! Love your positive attitude. Blessings!
Thank you for the views and comments. We all agree that Neurofibromatosis needs to come out of the shadows and be brought into the light of the many disorders.Why NF has been pushed aside is a mystery. Possibly because it is an unpredictable disorder that seems hard to sum up in a short summary or video with its many variations. My son Seth is my inspiration, but since starting a Support Group and attending NF events across North America I've been inspired by so many individuals and families. Strength shows up in adversity and pushes us all to work harder to make a better life for our friends and family with NF!
best news for 2015
www.cincinnatichildrens.org/professional/resources/research-horizons/archives/2013/winter/NF1-code/
I also have nf.
and sadly , I'm losing my right leg in a few days because I have a large tumor on the bottom of my foot. It hurts to badly..
+Krystal Hiscock I am sorry it has taken so long to see this post. I pray all went well with your surgery and you are healing well. I look forward to your response.
the surgery went good thank you, it has been a year and i now have a super cool prosthetic and can walk better than ever.
Krystal Hiscock That is great news!
great love to all of us with neurofibromatosis from Denmark who also have nf1
Hello, thanks for saying hi!
You are an inspiration Victoria, thanks for sharing such a positive attitude living with this complex disorder. Wishing you blessings and health.
I’m talking to a woman with NF1 and while we share photos, it seems like she doesn’t want to meet until we have some bond over the phone. She’s in her 30’s. I like her and wish she wouldn’t hide.
I hope she starts feeling more confident.
Thank you for putting neurofibromatosis out there, I was diagnosed with NF-1 when I was born and was diagnosed with scoliosis when i was about 8 or 9 because of NF. I have had 2 surgeries now for my scoliosis, one in grade 4 and one in the summer in between grade 6 and 7. I am in grade 8 now and may need another surgery in the future. I hope people keep on raising awareness for NF because the more awareness it has the more people can help.
You are welcome Emily. Our group is so thankful to have created this video with Centric Productions in Winnipeg. You sound like a very wise young lady and will be a great advocate for NF. Wishing you all the best.
I was diagnosed with NF 1 at the age of 2 months. None of my family had it so I was the unlucky one. And at age 8 I got a small Tumor by my right optic nerve and it was the scariest day of my life. If you have tumors and don't want to do chemo therapy do IVC treatment. I love and highly recommend it. For all who suffer NF God Bless You.
Blessings to you also.
This is so sad….I have NF1 but it’s very mild and I don’t suffer many major symptoms😢 my heart goes out to you all going though hash and life threatening symptoms💗
Mí consejo es que vivan una vida normal, no se tengan pena, ni limitados estudien una carrera un oficio y a laborar, nada impide que se realicen como personas y no tomen ningún medicamento. Procuren hacerse cirujía común buen cirujano dermatólogo y aceptence de corazón, amense y para adelante. El amor lo puede todo y la actitud positiva también.
Great advice!
Hi everyone, I too have nf and its really difficult to live with but life is what it is and I try to be as positive as possible..watching this video gave me some inspiration because I know that I'm not alone. It amazes how people will look down on you because of how you look, how they stare at you with a scorn without even knowing the severity of your situation. Times gone by I didn't even want to leave my house because I was sick of people starring me down,then I got some backbone and I even went to college and met some good friends who understood me. I still struggle but what can I do but try to live the best life possible. God has granted me the opportunity so I might as well live up.
Wow Michi! You are an amazing individual. I love your positivity and faith to stand strong and do your best, regardless of what you are facing. Thanks for sharing a summary of your ways to deal with NF and your praise about our video. Very much appreciated.
This video is awesome to me. I myself have this disease and it’s great to see many other people with this same disease. I definitely don’t have it that bad. But it’s great to see others younger older or even the same age as me with this. I hope one day that I can meet and see and talk to other kids like me who have NF.
Thank you for saying you enjoyed this video. I helped with creating it. We have definitely found it helpful to be part of a support group and meet others living with NF. Hopeful you have that experience in the future.
I’m 16 and i suffer from NF. NF caused tumors to grow on my leg making it hard for me to walk (i used to walk but not in a normal way) and it made my right leg much bigger than my left one. I used to get bullied because of that, still do. It also caused me to have learning disabilities, whih also made me a target for all the bullies but now i worked alot on my self, so my learning disabilities are starting to fade away making me in the top 5 rankings of my class and now i’ working hard to be able to walk normally again. I used to say to myself “why does fod hate me. Why do i have to suffer from NF and not others” i used to get depressed because of that and i even thought of doing suicide once, but now this disease doesnt affect me emotionally anymore, it made me a much stronger person. I am proud to say that i have NF and i wont stop fighting until we find a cure
I love to read how mature you have become! I do not live with NF myself, but my young adult son has it. I know what a struggle it can be. Keep being strong and pushing forward...you are an inspiration!
I have NF1 too, it's ok, just part of me now. I have to face many curious questions & remarks from strangers, but it's still alright as long as my family is with me.
I'm 27 and I have NF. It was a struggle all through school. But all the negativity help push me to show everyone were no different then anyone else
Great attitude.
I have nf1 too you guys are awesome for creating a video to show awareness
Thank you so much Izabella. That is so sweet of you to say. :) Thanks for checking in!
I have NF1 and I have had it all my life and I am so glad I don't have tumours or the other stuff
Hi all. I'm sooooo glad that this has been getting recognition.also that others are sharing their stories. I pray that they'll isolate the gene that causes these tumors and block it from spreading, even prevent it from mutating.
+5intheam Let's stand together in that prayer. I do believe that is a prayer that can get answered someday!
I have NF and ADHD my school life is hard but I always wear long cloths to hide the tumors. Most are small and hidden, but still there. Every now and then I get what I call tumor pains. I have had three surgery's and one was to fix a chiari malfunction. Both disorders cause learning disabilities, so it is vary hard to pass high school. I have never meet another person with NF, so it is hard because there is no one to relate to. Thank you for this video it made me so happy when I was watching it.
I am happy the video made you happy Ryan. I also hope you have been able to connect with others living with NF by now.
The unknowing the risk then we'll never to give up in fight everyday to survive till the next I'm 34 two-and-a-half years old I was diagnosed
My name is WELLIgTON I'm 37 years old I'm Brazilian and I live in Brazil, I'm also a carrier of neurofibromatosis, I've suffered a lot of prejudice.
Hi Tracey. My daughter also has NF1 and 2 and just recently diagnosed with Scoliosis. The first 10 years of her life were quite normal until about a year ago when the pain started to get to her and Drs kept putting it down to growing pains but i knew it wasnt that. Its been a struggle coping and i say that from a parents point of view as Drew has been a normal girl with a carefree life and takes life day by day. I think it affects me more emotionally and at times i find myself cowering in the corner crying my heart out BUT Drew keeps ME strong. We posted a video as well to help raise awareness and hopefully find a cure. Much love, Robert xox
+Robert P Thanks so much for sharing your deepest emotions with us. I also struggle with fears and cowering at the thoughts of this progressive disorder, but find much comfort in our faith, friends and community support. You are welcome to share your link of your video, I'd love to see it.
+Manitoba Neurofibromatosis thank you ☺
+Manitoba Neurofibromatosis helo i am from kerala is there any medicine for neurofibroma
I have NF1 too. My mom and sister also had it. My sister passed away in 2006 and my mom in 2009. Both were due to cancer from tumors.
Oh no Jasmine. So sorry to hear about your Mom and sister. NF is such a variable disorder and affects everyone so differently. Thankfully there are many more trials happening for NF now, then when our son with NF was born 19 years ago. Wishing you health and happiness ahead. Once again, so sorry for your losses. :(
I was diagnosed with NF2 at age 3. I've had 8 surgeries and 3 radiation treatments. I can barely keep my balance and am losing my hearing... I will soon be starting chemotherapy. Living with NF is NOT easy, but we are strong! We can get through this we just have to keep looking forward.
I hope all is well Maria!
"Our greatest victory in battle is not of the one who's stood the longest without baring the scar but the one who fought to stand beside him baring the scar "
Keep fighting guys x
Love this!
Tyler is my brother :( danielles son. He went through a severe meth addiction for 4 years because of pain and is doing very well now. He is 17 months in recovery
jay and adri I am so happy Tyler is doing so well now! Thanks for sharing. 💙💚
OSHI & Tracy thanks 😊 he is currently looking for a job and has put in over 50 Applications and has only got one interview who didn’t call back. :( Because of his face tattoo
I am from northern ireland and have nf1 out of 2 brothers and 4 sisters I am the only one with this thankfully my 3 children are all clear they are all in their 20s and have had regular check ups
Didn't know much about nf1 am almost 30 and have only been diagnosed with nf1 growing up I had a lot of what I and my parents thought where just birthmarks it wasnt until recently my wife noticed a large lump below my arm that I went to the doctor and he told me that I had nf1 I've had so many doctor appointments and have no idea what the future holds I can only hope that I am not a genitic carrier and that my son didn't get nf1 thank you so much for this video it has giving me some insight on nf1
gareth mccomb you are welcome.
+Manitoba Ne'er of into maths is
Like he is saying he is not NF carrier.. How can one affected with NF can know that he is not carrier of NF.. What are the tests that are used to identify this.. Plz tell me..
I have NF1 also I appear to have it fairly mild right now but it is terrifying that we have a shorter life expectancy it makes me so sad I HATE NF1
I have mild NF1 too, but I don't think it'll impact our life expectancy as much as compared to someone with a stronger case of it ):
I have nf and I'm Seth too stay strong brother
Buenas tardes y para Neurofibromatosis no podrían hacer una vacuna o quemar con láser el tumor que ataca los nervios es solo opinión saludos.
People don't understand that it had 50% chances of passing to future generation.. It can be controlled by Genetic testing.. I am affected with it but my fiance broke up with me when I told him about it.. I told him about all the possible options we can take to control in our future child. But he was not willing to take risk.. It cause a great heart break for me else all was well with us. Why I am getting rejection when it is not at all my fault. Am I not able to have kids or loving partner..
im so sorry to hear that happened to you. in conclution : 1st your ex is a coward. 2. he obviously didnt love u unconditionally. cuz I had a relationship with my ex gf who suffers with nf. the reason why we broke up wasnt about her NF. I was supporting her, throughout her pain. it's okay u gonna find a real man who loves u unconditionally.
Hello Anjali, Thanks for sharing your heart ache with us. So sorry your finace was so heartless. Yes, if people can afford pre-implantation genetic screening, then passing on the NF gene can be controlled when you are ready to have children. You are so right, this is not your fault! I also believe you WILL be able to find the love of your life when it is meant to be! Wishing you many blessings.
Thanks rahman. Nice advice.
Your fincee is a fucking low life you don.t need anyone like that l have stang 1 of nlf it hit my left side of my face l do have a great fince her name is tabby she is right there for me every day of my life as l am 48 years bean liveing with this cents l wás 7 years old as l get older my pain has got real bad anymore l wish dr.s hear in ont canada will learen more about this one day you will fine the right person like l did it was love at first sight ever need to talk let me no my name is kenny but l go by K cheer up you are better then your fincee
Sorry sweet to hear about your heartless fiance I have NF1 as well but I do have a little dog who gives me unconditionally love the best thing that came into my life she don't desciminate on what I look like she is my world and I love her 🐩🐩🐩🐩
Thanks Tiffany, I may need to learn more tips and tricks to get this video out to the public.;) I also think more people care than we realize. With time and hard work, we will make more people aware of NF and hope for a cure!
I have NF1. I was diagnosed at a very young age. I have many café aut le spots, a tumor about two inches away from my belly button, and I'm starting to get the neurofibromas on my arms and my legs. I have chronic migraines that can cause a seizure if I don't take something right away. I've have had three seizures in my life. At work, I have to avoid the freezer if I can. The cold causes horrible pain. One day I had to go in it and when I came out, I was in excruciating pain. I have bad pain in my knees. My dad and his mom have NF1
+willow12355 Hey Willow, Sounds like you have to deal with lots of pain. So sorry to hear that. Praying that a cure for NF happens soon, for now I hope you find some treatment to help with your pain. I wish I could help you more.
Any suggestions from some of you struggling with the same pain?
Okay I have NF1 and I’m really happy with my life because I choose not to think about the what if’s and just live my life
Adalia Campbell me to
I have NF and i almost failed school because it’s harder for me to learn
Littlemix Dream, Hello, thanks for sharing! I hope you are learning some strategies to help you learn. 😊
Hi my name is Andrea and I’m 19 years old I have been living with nf1 as well as my big brother and little sister. It was hard in school. Recently my sister passed away this year from a seizure.
Hi Andrea, I'm Marco and I'm suffering from nf1. On my channel load video where I talk about how I live the disease
Sorry to learn of your sister's passing. Wishing you and your family health and better days ahead.
@@tracygregorash thanks so y
@@tracygregorash much
Angelic, I'm very sorry for your loss. I'm a 44 yr old male and have had NF all my life. I am thankful, that I could have had a lot worse complications with the disease than I have. I wish you and your family well.
I have NF and have had 2 surgeries because of it.
Why does this video almost made me cry I'm tony and suffer with nf and it a rough life to live not knowing what will happen next I pray to those who have neurofibromatosis
Hi, i'm Bryant. I'm 46 yrs old and i have NF2.
My dad has this, my grandmother(God rest her soul)
My brother is a carrier of this but shows no sign of it. His kids , my niece and nephew show no signs of it but are carriers of it. My daughter that is 12 now shows no signs of it so far which is the age i was when i noticed that i had what my dad and grandmother had. At that time doctors weren't familiar with it . Thanks for sharing this and letting others know they're not alone.
+5intheam Hi Bryant, You are welcome for sharing the video. We are certainly NOT alone in living with NF...thank goodness. Each year more and more support groups, research options and diagnosis's are made. Together we can be stronger in our fight! Blessings to you and yours.
+5intheam i'm 43 years old have nf1 and i'm glad i am not alone! thanks for the video Tracy Gregorash and sharing your stories.
+Tracy Gregorash
Hi tracy. A long time ago i met a young girl that had nf1 which causes birth mark like splotches that can range in size and also spread. Her family didn't know much about it either. They were surprised to meet someone like me that had nf2. Luckily i had a news letter about the neurofibromatosis foundation
That my dad had given me in my car. I gave it to them. It told about their studies and of camp gatherings for those that had this condition to meet and have some fun. I hope it brought them some comfort.
+sun ny day
Thank you for sharing too
+5intheam I am sure you did bring them comfort! Support is so important.
I have NF too. I am fortunate that all my my tumors have been small fatty tummors had one on my leg back and forarm that i had removed. I have had one grow on my left Bicep recently in the last 2-3 years and we are monitoring it looking at the posiblity to remove it. Unfortunelty its wrapped up in nerves so many surgeons dont want to remove it because i could lose the movement of feeling in my arm.. It doesnt cause me pain unless its pushed on or i hit it agiasnt something by accident.
Ive had NF since i was a little kid. Im 21 now i dont let it rule my life. As a kid i would be asked about it and teased for the ones on my arm(Before i got them removed) and i would just say that they are just bumps that ive had forever and noone really said anything.
Only advice i could give the little kids in this video is to not Care what other people think or say about you. When you react to them or get upset about what they say you let them win. Ive lived my last 5 years with that motto and im happy. Thats not saying dont care about anyones opinion, but to not care what bullies and negative people say. At the end of the day you know who you are as a person and you have to be comfortable with that. Happiness is a choice, you can choose to be upset and let people get to you, or you can choose to ignore the haters and live your life as a positive one.
Brian Wool I think you have great advice to share. I am glad you choose to be happy and overcome the NF diagnosis. I can not even imagine how hard it is, but am very inspired by the NF heroes I know and have in my life.
Thank you for your reply and I wish you much happiness and health. #Blessings #NFHero
My son had nf1 and died from cancer (JMML and 3 Bone marrow transplantation s ) when he was 13
I'm 29 and have nf1 i had radiation when I was little to shrink a tumor on my optic never on the right eye I feel all of you had no friends was always teased was hard for me to learn things wish I could meet someone like me who understands what I'm going through
Hi...... could u pls....tel me radiation how it works on tumor
I'm jyeahzmen I'm 23 soon to be 24 and I have NF iv been living with it since I was born I have a very large tumor along with other health problems due to NF, it's nice to know I'm not alone but same time feels like I am very lost but I try to push through it as much as possible,this video it's very touching and I just want others to know there are many people who are here for you and I as well will be if anyone would like to talk
Thanks for being such a great advocate for NF and others that need support.
1:31 (looks at my middle finger in dismay after two surgeries) looks like we're staying together bub
it is sad that this video has 2,435 views, this shows you how much people care.
Tiffany Wells It is getting more views finally...slow, but steady. :)
Yep, that's good! I've been asking big youtubers like thefinebros to do a video on it, so far they haven't.
Tiffany Wells We just need to keep up the faith and perseverance!
I was diagnosed with NF when I was 7. Since then I have experienced scoliosis, but no tumors so far. I've just had tissue growth these past 11 years..
Ryndsy I am happy your NF has not affected you too much. Have you needed surgery for your scoliosis?Blessings Ryndsy.
Not yet, I've had multiple xrays in the past and recently I have been going to get ultra sounds done to see if my scoliosis has affected my internal organs. Though, nothing bad has shown up yet.
My mom says I'm lucky bc I have nf but I have no tumors
Same here my mom also say same think
Im 14 i was born with nf 1 im self counsious to wear anything cuz i have spots everywhere and fibromas growing im just scared for the future i dont wanna grow up fearing what will happen to me
Hello Zsanette. Thanks for
saying hi. You are not alone in your fears, as NF is a progressive disorder and
it is natural to worry. Do you have support near you? Many folks do not have
big issues and live perfectly normal lives. You will need to grow accustomed to
some stares unfortunately, but I do think you should hide, but stand strong to
who you are. Be proud of your differences, you were made unique and special.
Educate others along the way, which will help yourself and everyone with NF.
Zsanette Delatorre don’t be self conscious cuz people don’t even know what they are I got won on my boob.
I have NF1 i just recently found a bump on my head, i didnt actually start loking things up until i found it
+TurkeyButtStudios Thanks for checking in. I hope the bump is very minimal. Do you have support near you?
I have nf1. I also have add which I was told I'd because of the nf1. Luckily it's not as bad as others tho. (Just some spots and a couple bumps on my wrists. ) I don't want to risk passing it on. I'm only going to adopt kids.
I have nf1 but I don't have scoliosis I am 27 my eye power is _2 ... but have some tumours on my hand ,back side , and chest but no tumors on my leg .. don't have usse for walking , running, and my bp is too Normal and hearing good .. I have a question nf 1 can causes blindness paralysis and causes cancer
hello my name is allen and i have nf too, tumors came out of my body after my surgery in my left neck bcoz of lymnods..
1 out of 3000 is very really rare but let us not look on it, i believe God has a plan for us, let us always pray. we are all healed in Jesus name
Hi. my 9 year old was diagnosed at birth. no tumors so far. but learning problems and alot of social issues are our biggest struggle. I am thankful for your video,we do not know anyone else with NF and its hard dealing with this alone.
+Rhiney Maceachern I'm so sorry you have to deal with this diagnosis alone. I'm not sure where you live, but I truly believe support and community are so powerful. I know we continue to reach people in our province who do not know we exist, but when they discover us, they are so thankful to know others dealing with the NF. When you realize it affects 1 in 3000 births, you will soon find others in closer proximately than you realize. Have you connected on any social media sites yet?
I have only started searching G+ for communities I'm not on Facebook. I'm in the process of doing my sons phyc and speech testing. He is only at a five year old social range and my heart breaks every day for him
+Rhiney Maceachern I know EXACTLY how you feel Rhiney thank YOU for sharing your experience and bearing your soul, much love to our NF hero's
+Rhiney Maceachern Did you see this yet?issuu.com/childrenstumor/docs/newlydiagnosedwithnf1guide-final?e=11776789/7858308
Manitoba Neurofibromatosis no I hadn't. Thanks very much. My son just went through testing to get a category at school. His NF has affected him in many ways. He is nine but is at a five year old social level. Has a learning disability. Is in grade four but they put him at a grade one learning level. Has anxiety disability, ADHD, the list goes on and on and on. His doctor says most of these are attributed to his NF. I worry so much about him.
I have nf1 and I also have learning disabilities, cafe latte spots, sensory with my scalp and ears, and my spinal cord sticks out of my back
Thanks for checking in and saying hi. Blessings!
i am from karachi pakistan but i am nt awaerd that do u hv nf1 or nf2
I was diagnosed with nf1 when i was less then a year old. i have congenital pseuadoarthrosis of the tibia that came with the nf. I get lots of headaches and such. sometimes my friends look at me weird because i have so many doctors appointments
Hoping you are doing well Katy! My son also has pseudoarthrosis. He has had a few surgeries over the years. Yes, there are many doctor appointments to stay on top of, but it's nice to know people are caring for you. Don't worry what your friends think, eventually they will understand how strong you are!
At night I feel alone because I have NF it effects my left arm and left side of my back and left side of my chest. I got bullied through elementary school and stopped during high school. Lately I been having weird sleep episodes almost like sleep paralysis but it’s every 2 weeks.
I hope you got your sleep paralysis figured out. Thanks for checking in!
I'm 50 so far. NF type 1. I hope yours is mild
I was diagnosed at 19years old. I avoided Dr.s all my life up till then. I went into a bad asthma attack so went to hospital for breathing treatment. They always give a lung spray before one. That's when I was diagnosed. Had lung surgery. I'm 46 now, in alot of pain daily, problems see UK nv,ect. Past year I've had 30 from elbow down. Find a cure. Not that it would help but I'm donating my body to science
Hello from Romania. I have NF1 too since I was born. It's very hard to try to stay strong and go on but that's life. But I want you to ask you, does someone with NF1 have healthy children? That didn't got it? I know the riscs. They are 50%-50% something like a russin roulette.
one of the the parents has it. there is a 50% chance that a child will have it
I am 30 , I have NF1 and my dad and his dad had it , it sucks more socially
I've have NF1... And it took the docorts till I was 16 to notice. I have a toumor in my top right eye which get operated on every 5 years as it grows and can't be just sawed off. Also have a lump on my leg which causes nerve damage. Have hundreds of cafe au lait spots all over my body there is only 1 hospital in the UK which deals with it and I only got a refusal 2 years ago I'm 36 now I found the hospital online and told my doctors I would take a lawsuit in them unless they refured me as they could not help me
Missie Messoud is it guys hospital in London because I go there
Sorry to hear you have had little support with your NF Missie. Wishing you health and better support in the future.
I also have this disorder. I was diagnosed at birth. I have had 2 surgerys so far to remove large toumers one from the side of my head & the other that was the size of a golf ball from my ear. Having NF sucks
Hi Rod, Thanks for sharing. Sorry you have had to endure 2 surgeries due to NF, I hope they were successful. Yes, NF sucks. Wishing you health, happiness and strength.
It runs in our family. My sister has it through spontaneous gene mutation, and my husband has it as well as one of my son's. My husband brother has it his mother, aunt, uncle's cousins and more so my son really doesn't feel different yet. I don't think he will. We knew that at least one would be born with it. He had cafe au lait spots at birth. The pediatrician came in to deliver the bad news and was surprised I already knew. Any Whoo he's living his life to the fullest he can. He's 23 and his so far looks to be minor where as my sister's is severe.
i have NF1 as well
I have this .it cause me to have cancer. It hurts .I fell so lost glad I seen this
Sorry about your cancer diagnosis Arlandrea. Im glad the video helped you not feel so alone.
I have NF2. I lost my left eye and I'm hard of hearing + tinnitus. I won't let this take over me
I wonder why it is always the left eye, SO strange. I have as well and have read about so many others having challenges with their left eye.
Hello, I am 19 and have nf1. I was diagnosed at the age of 17 with this.
I don't have any major symptoms as of now but I have many tumours all over my hand stomach and neck. Handful of them are also on my back. These tumours are not visible to anyone with naked eye but if someone closely looks at the site he can spot it. The largest tumour is 2cm in size and roughly 50 in number.These tumours are under the skin ones. Some of them are painful when pressed but not everyday.
I am very tensed to think how my future will look like as no one can predict the rate of growth of these. tumours. My mother also have nf1 but her is very mild she get to know about it at the age of 40.
-Can my condition worsen in future?
-Is meditation able to slow tumour growth or can cure nf1?
I hope you’re doing well. I’m glad you do not have major symptoms. Look for an NF support group near you. They are very helpful. Blessings.
I have nf1 but i don't have no pain just itching and when I'm out with my husband and are friend my back just gets sore but it don't hurt.
princess Nightingale Thankful you have such a mild case. That’s awesome. Thanks for checking in.
I too have neurofibromatosis
I'm on 24 and have neurofibromatosis I only have a small tumor on my left arm I'm a lucky one so far
The little girl Kiara is so sweet and lovely..
Neurofibroma theek ho sakta hai
100%sure treatment. Yoga or kush
Ayurved medince.
My what's app 7080387017.
Jai Hind Jai Bhart. 🇮🇳
@@lovleshsharma8353 :/
I have NF
Hello, Thanks for saying hi. You are not alone. 1 in 3000 is actually a very high ratio of people with NF.
I hope you are doing well.
I think I have this. The lumps started when I was 17 and now I have 5 lumps on my body, but I have no situation till yet.
1. I play football.
2. I have almost good memory.
3. I don't have cancer.
Do I have any chances in the future where this can get worse ??
Hii shivam.. where are you from?
Hello Samantha. Thanks for saying hi. It sounds like you have had to conquer a few trials with your NF1. I'm thankful to know you have a supportive family. Do you also have an NF Support group you can connect with at events or meetings?
Manitoba Neurofibromatosis I have nf 1
Meg Rempel Hi Meg. Thanks for checking in. Blessings and health.
Hi Terhi! So sorry you have so much to deal with at such a young age. I pray you have strength, health and stand strong!
I have NF2,I have been thru the ringer as far as surgury is concerned...my prayers are with us all
tammy sisneros Prayers are always great. Sorry you've had many surgeries due to your NF2.
Yo también tengo neurofibromatosis
I too have nf 1
Welcome. I hope you are doing well. Blessings.
my name is Samantha and I have NF1. I found out whe I was 11 that was 9 years ago. im blind in one eyes, have headaches that last for days, and cant speak for about of the tumors. I have leaning issues and cant be left along, before my family fears I will got dizzy and fall again. and I life with NF1.
+Samantha Jones How are you doing? Do you have a support group near you?
Hi im 13 and i have nf and i have the neromus around my body and they cause pain and i have to get mris every year and i get bullied because of the large café spots..
Sorry you get bullied. Thanks for checking in and saying hi! I hope you are doing well now.
Dont just sit there and take it beat his ass
abraços para meus irmãos
I was 4 years old when I was diagnosed with NF1, there had been earlier signs that something was wrong. Growing up was hard, as I had a few therapy classes to go to, to learn to walk and talk properly. The only visible signs I have it are the cafe au lait spots on my arms, shoulders, chest and legs, and fibroma lumps on my chest and back. I also had a learning disability as a result and for most of my school life I had a teacher aid with me, as my motor skills were affected by NF. There are still notable signs that I have it today, but it's not as bad as when I was a kid. Unfortunately here in New Zealand, we don't have many support groups that we can go to, but there is a charity that can be donated to, and soon I will be meeting up with the lady who runs it and meet her daughter who has it, and like the saying goes "I may have NF, but NF doesn't have me"
Hi Michael, I'm glad you are connecting with the New Zealand NF organizer, and her daughter. Let us know how it goes. I love that saying..."I may have NF, but NF doesn't have me". That is the attitude we have to keep!
The meet up went very well, her daughter was amazed that I had NF1 as well, and it was very interesting to hear what symptoms we have in common and what we have differently, it meant a lot to me meeting someone outside of my family who also has it.
Michael Shearer That is wonderful to hear! Support and knowing someone "gets" you is so important. Blessings.
I have neurofibromatosis also suck I done a video about it still learning
If you want to know where I get my IVCs I go to Riodan Clinic the people there are so nice people.
the So cutie baby 😢😢
soy de Venezuela tengo un hijo con neurofibromatosis plexiforme, desde los dos años fue diagnosticado con esta patalogia lo tengo en control desde sus dos años, fue operado en la axila derecha se le estrajo un 25 por ciento de esa masa y desde entonce solo su estudios son de resonancia magnética, actualmente tiene once años y en estos momento se le activo uno en la parte del cuello del lado izquierdo y presenta ramificaciones en la parte cardio vascular están en estudio para ver si operan o en estos momentos le mandaron unas pastilla para ver si se detiene el crecimiento.
I have nf1 I had the brown markes I was 17 when I found out I had nf1 but it was called vonreclin howson skin disease but now it is called nf which is better .
My little brother is 9 years old and he has this disease. Do all those who get it have tumors and learning difficulties? I am very worried about him. I think about him all the time. At the same time, I am afraid for my mother.😢
Yes, many people with NF have learning difficulties, however, they learn to manage them and have productive lives. Try not to worry, but that is so sweet of you to care so much. Blessings.
I have NF1, i always try to live like i don't have it
Me too...i forget its there
@@nakidaq7866 sadly others dont forget
I have neurofibromatosis stage 1
Abigail Obrien Hello Abigail, My son also has NF type 1.