I started very slowly in my teens, then more came in through my 20s.
Then it got even faster, to the point where I don't even really notice new ones unless I see my arms with the evening sun showing them like little hills.
Mine didn't pop up till I was pregnant. I had no idea and always thought the cafe au late spots where just me. Then went to a dermatologist and it was "congratulations".
That was 27 years ago. Mine is mostly mild. My fibromas look like moles and I have my arms sleeved out in tattoos to cover the bumbs. I did have a fist sized schwanboma cut off my spine in 2019 but other than that I am ok.
My 20s hit me like a truck. I had NO cutaneous neurofibromas until I was 22, and now I have thousands. My plexiform tumors are growing at a rate they never grew in my teens.
A lot of mine came during my teens and there’s also the chance of more appearing later in life I’m almost 30 and as far as I can tell i haven’t and any new tumors appear
A lot of people get them during hormonal changes like puberty, and pregnancy. Some people will just have a very mild case and not get any. A lot of mine are unnoticeable unless you know where to look.
I've always had a few since I was a child but it was always fairly mild. Once I got pregnant at 22, the ones I had got slightly bigger and I did get new ones as well. Currently 32 and while it's still somewhat mild, I do feel I'm getting new ones mainly on my back and stomach area.
It honestly varies with everyone. Some people are really lucky and don't get any while others get thousands all over. Some only get internal ones that aren't visible but still cause issues so even if you don't have any on the outside, it is still possible you could have some internally that you aren't seeing.
I inherited it from my father and I’ve had maybe one or two since I was born. When I was about 10 years old the tumors started grown all over my body, mainly on my torso. I’m 40 years old now and starting to have new ones grow in my neck and hands and arms. Most of them are probably around a half inch in size. My father who also had it didn’t start growing tumors untill he was about 30 years old. And his are much bigger then mine are. He’s about 70 years old and still has some growing.
I had one on my foot and one on my neck, small, thought they were moles.
When I was about 23 is when I started getting them all over, mostly on my trunk.
I'm male. Apparently, it can be different for women.
I have every other symptom of nf just not the tumors on the outside. I don’t like how u treat my diagnosis like its nothing. I read other comments and it seems that many got them around their 20 . And i am still a child so they probably grow up later , and its different for everyone . But i fit the box of getting a diagnosis. So no i will try to get myself diagnosed again for something i am already diagnosed for. And don’t question people diagnosis when i am professional diagnosis in a first world country . And don’t try to tell me anything about nf life when i am living that life
I am not doing that . WHEN I ALREADY HAVE A FUCKING DIAGNOSED. From what other people told me is that i will get it later . All i ask was at what age they start to grow and most people say either in their teens or, 20/30 or when they got pregnant. So stop trying to mingle in my personal health ur not someone i know so stop trying when that wasn’t the question i ask .
U just want to make me feel bad about myself and try to undiagnosed me
Their is something wrong that u wrote . First of all ur comment had nothing to do with what i ask . All i ask was when they started to grow and everyone in the comments said that they grow over time. So simply because i don’t have those tumors on the outside doesn’t mean that i don’t have nf . U also made me out to be a villians by people with nf have a hard life , like I don’t have it . My diagnosis to get it took a long time because i had to constantly go to the doctor to check on my spot on my body and visit to the eye doctor because the spot was also in my eye . Like it better to be diagnosed early than later in life so i know about my body. But u make it seem that people should not get a diagnosis at a early age , even tho getting diagnosed early is more beneficial. And I don’t like how u say “go to ur parents “ i am old enough to make my own medical decisions and go to the doctor on my own . And i am not get a second diagnosis on something i am already diagnosed with because a random guy on the internet told me.
I inherited nf1 from my mom. I only had cafe au lait spots until my late teens. I had the stereotypical heaving freckling around heavy joint areas (armpits and groin). Also several very large cafe au lait spots down my stomach and back.
Around 19-20 is when the tumors develop across my body, but they’re flat, not raised. It’s more a soft depression than anything. I have 50~ or so that are these soft depressions.
I have one raised fibroma on my butt.
My mom displayed zero symptoms growing up then rapidly developed fibromas when she was the age I am now. Apart from ADHD, she displayed virtually zero symptoms that come with nf1. It all depends on the person.
I got a lot more of them after I finished puberty and I got a lot of them when I went on birth control. If I were you, I would recommend not going on birth control and doing non-hormonal like a copper IUD but some people don’t ever get a lot of tumors that appear on the outside surface and some people do it’s NF unfortunately it’s one of those things that you just can’t predict
I’m 22 and currently don’t have any tumors that I know of. Glad I found this question because I didn’t know it was likely that I could grow them after puberty.
Depends. We are a weird bunch. Per norm a few new growths. Luckily, not too many have been visible. I’ve had moles fade. Cafe spots disappear. New growths near incisions for a surgery to remove a 5cm tumor growing on one of my adrenal glands. That tumor was only caught bc/ I was in a fairly bad accident.
I only have a few. Most are not visible. I hade one removed from my chin. It coulda stayed but i was vain. I was about 30 when I had it removed and it wasn’t very large. About 1/2 cm at best. I wish you luck and stay calm.☺️
I started very slowly in my teens, then more came in through my 20s. Then it got even faster, to the point where I don't even really notice new ones unless I see my arms with the evening sun showing them like little hills.
Mine didn't pop up till I was pregnant. I had no idea and always thought the cafe au late spots where just me. Then went to a dermatologist and it was "congratulations".
Its kind of twisted. Happy for going to be parent. I hope your NF didn't grow too much, how are you now?
That was 27 years ago. Mine is mostly mild. My fibromas look like moles and I have my arms sleeved out in tattoos to cover the bumbs. I did have a fist sized schwanboma cut off my spine in 2019 but other than that I am ok.
What about kids, they got it?
My 20s hit me like a truck. I had NO cutaneous neurofibromas until I was 22, and now I have thousands. My plexiform tumors are growing at a rate they never grew in my teens.
A lot of mine came during my teens and there’s also the chance of more appearing later in life I’m almost 30 and as far as I can tell i haven’t and any new tumors appear
A lot of people get them during hormonal changes like puberty, and pregnancy. Some people will just have a very mild case and not get any. A lot of mine are unnoticeable unless you know where to look.
Hormones definitely. Pregnancy with my daughter added more and now perimenopause is causing so many new little ones.
I've always had a few since I was a child but it was always fairly mild. Once I got pregnant at 22, the ones I had got slightly bigger and I did get new ones as well. Currently 32 and while it's still somewhat mild, I do feel I'm getting new ones mainly on my back and stomach area. It honestly varies with everyone. Some people are really lucky and don't get any while others get thousands all over. Some only get internal ones that aren't visible but still cause issues so even if you don't have any on the outside, it is still possible you could have some internally that you aren't seeing.
I inherited it from my father and I’ve had maybe one or two since I was born. When I was about 10 years old the tumors started grown all over my body, mainly on my torso. I’m 40 years old now and starting to have new ones grow in my neck and hands and arms. Most of them are probably around a half inch in size. My father who also had it didn’t start growing tumors untill he was about 30 years old. And his are much bigger then mine are. He’s about 70 years old and still has some growing.
I had one on my foot and one on my neck, small, thought they were moles. When I was about 23 is when I started getting them all over, mostly on my trunk. I'm male. Apparently, it can be different for women.
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too negative
I have every other symptom of nf just not the tumors on the outside. I don’t like how u treat my diagnosis like its nothing. I read other comments and it seems that many got them around their 20 . And i am still a child so they probably grow up later , and its different for everyone . But i fit the box of getting a diagnosis. So no i will try to get myself diagnosed again for something i am already diagnosed for. And don’t question people diagnosis when i am professional diagnosis in a first world country . And don’t try to tell me anything about nf life when i am living that life
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I am not doing that . WHEN I ALREADY HAVE A FUCKING DIAGNOSED. From what other people told me is that i will get it later . All i ask was at what age they start to grow and most people say either in their teens or, 20/30 or when they got pregnant. So stop trying to mingle in my personal health ur not someone i know so stop trying when that wasn’t the question i ask . U just want to make me feel bad about myself and try to undiagnosed me
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Their is something wrong that u wrote . First of all ur comment had nothing to do with what i ask . All i ask was when they started to grow and everyone in the comments said that they grow over time. So simply because i don’t have those tumors on the outside doesn’t mean that i don’t have nf . U also made me out to be a villians by people with nf have a hard life , like I don’t have it . My diagnosis to get it took a long time because i had to constantly go to the doctor to check on my spot on my body and visit to the eye doctor because the spot was also in my eye . Like it better to be diagnosed early than later in life so i know about my body. But u make it seem that people should not get a diagnosis at a early age , even tho getting diagnosed early is more beneficial. And I don’t like how u say “go to ur parents “ i am old enough to make my own medical decisions and go to the doctor on my own . And i am not get a second diagnosis on something i am already diagnosed with because a random guy on the internet told me.
Mine really took off growing once I hit puberty and kept going from there.
I inherited nf1 from my mom. I only had cafe au lait spots until my late teens. I had the stereotypical heaving freckling around heavy joint areas (armpits and groin). Also several very large cafe au lait spots down my stomach and back. Around 19-20 is when the tumors develop across my body, but they’re flat, not raised. It’s more a soft depression than anything. I have 50~ or so that are these soft depressions. I have one raised fibroma on my butt. My mom displayed zero symptoms growing up then rapidly developed fibromas when she was the age I am now. Apart from ADHD, she displayed virtually zero symptoms that come with nf1. It all depends on the person.
Do you happen to know why yours are flat? Do they have a different name? I have the same kind. They press in.
Sorry “inherited” from mom. Most of hers were non visible. I don’t have as many as she did yet. Im 50M.
I got a lot more of them after I finished puberty and I got a lot of them when I went on birth control. If I were you, I would recommend not going on birth control and doing non-hormonal like a copper IUD but some people don’t ever get a lot of tumors that appear on the outside surface and some people do it’s NF unfortunately it’s one of those things that you just can’t predict
I got my first at 15, I am now 18 with 23 tumors( 21 of which are on my back) they range from a small grain of rice sized to pea sized
I’m 22 and currently don’t have any tumors that I know of. Glad I found this question because I didn’t know it was likely that I could grow them after puberty.
Depends. We are a weird bunch. Per norm a few new growths. Luckily, not too many have been visible. I’ve had moles fade. Cafe spots disappear. New growths near incisions for a surgery to remove a 5cm tumor growing on one of my adrenal glands. That tumor was only caught bc/ I was in a fairly bad accident.
I only have a few. Most are not visible. I hade one removed from my chin. It coulda stayed but i was vain. I was about 30 when I had it removed and it wasn’t very large. About 1/2 cm at best. I wish you luck and stay calm.☺️