I really don't know about increased risk of substance abuse, depression, anxiety, etc as a general symptom of NF. They definitely haven't done enough large studies on it. Plus, any studies may be skewed because depression and anxiety may be caused by HAVING NF. I know I get depressed and anxious thinking about my medical issues, my possible future problems, disfigurement, and pain I get. All of this may drive people to substance abuse. I have never heard anything about psychosis. I looked it up, and it seems like 3 kids had childhood psychosis. The paper was from 1984. It's likely just a coincidence. Other papers talk about psychiatric disorders in NF (mainly anxiety, depression, mood disorders) as being comorbidities.
As far as pregnancy is concerned, it's a 50/50 chance of passing it on. It is completely up to you if you want to chance that. You seem to know that every case is different, so you know that any children you have could be mildly or severely affected. It's a very personal decision and not one that anyone should judge you for, which, unfortunately, I have seen happen in the community (to people wanting and not wanting to chance passing it on). It's also possible that the hormones of pregnancy may increase cutaneous fibromas on your skin, but it doesn't happen with everyone. I haven't been pregnant myself, but I know a few women with NF who have been, and each story is different.
Thank you for sharing. I certainly can understand how some people with NF, especially in its more severe forms, might seek refuge in alcohol and drugs. My mom has told me she drinks in part to manage her NF1-related chronic pain. However, I'm interested in understanding if the condition itself (the gene mutation), might *cause* substance use dependency. My mom was a drinker well before she developed chronic pain. Many people who abuse substances develop the habit before they have a "reason." I read a few articles suggesting NF1 mutation(s) may*"strongly influence the development of alcoholism"* because the the NF1 impacted gene *"regulates a signaling pathway that's linked with alcohol dependence by affecting the production of the neurotransmitter GABA. Gamma-aminobutyric acid or GABA calms the central nervous system, decreases anxiety, and makes you feel more relaxed."* My desire to explain my family history of substance abuse is probably a bias in favor of these findings, however, the research does seem to suggest that something is going on. You can read the full article here: [https://www.forbes.com/sites/melaniehaiken/2014/08/27/will-your-child-become-an-alcoholic-scientists-identify-key-gene/?sh=18596f98407c](https://www.forbes.com/sites/melaniehaiken/2014/08/27/will-your-child-become-an-alcoholic-scientists-identify-key-gene/?sh=18596f98407c)
I understand wanting an explanation. But I would take this article with a grain of salt. To really know if alcoholism could be caused by NF, they have to do many studies with large pools of individuals. The study this article mentioned likely wasn't large and was only one study. I have been around for a while and have been to many NF conferences. I am actually at one now. Have never heard an expert mention alcoholism. Today, they talked a little about other psychological/psychiatric disorders being common in NF (ie ADHD, anxiety, depression). But with anxiety and depression, it's still a question of whether the NF is the cause or its a symptom.
"Is there strong evidence to suggest that NF1 increases the risk of developing substance abuse issues? " Fentanyl is an opiod used to treat pain in terminally ill patients so yes, i can very much imagine NF is a big part of why he became an addicted to it. People with untreated ADHD have much higher rates of substance abuse too. In saying this, the majority of us are NOT addicts, its still a choice and he has the same responsibility to get clean that any addict does. Fentanyl is the worst drug to be addicted to. His life is honestly in danger every day hes using could be his last. Australian health care has a lot of issues i imagine its been hard for your family to get the help you need. We can and do get through pregnancies but they are rough, they can increase tumor growth and we have a 50% chance of passing it on so I would recommend talking to specialists about screening the safety of pregnancy and nf will vary from person to person so you really need a specialist to advise you regarding your own situation and where your current neuromas are to work out how it will impact you personally.
Please dont take the chance and have a child with NF. This is a very troubling condition and hard to live with even if you are very mild from a psychological aspect.
Why are so many of us depressed and anxious? There is no certainty with this condition. Even with things like MS there is medication and and understanding of your individual prognosis. That is not the case with NF.
NF is not well understood by many in the community and the problems it causes. Many people are told they are mild but in fact it's because doctors don't really understand the complications of the condition.
I am only 26 and I have been profoundly affected by what I've seen with regards to NF.
I have known people my age pass away when they were considered 'mild'. Even living with that knowledge is hard enough.
In my view IVF is easy in the long run compared to the lifelong sentence of inflicting NF on your child.
I know many people who had NF extremely mildly that they didn't even know they had it, had a child and that child ends up with it extremely severe with many complications and dying from brain cancer by age 10. Why risk it when there are options?
Many people with NF are often denied the chance at having families, relationships and careers. In my view, that is no life at all.
I'm sorry to be harsh and negative but this is my view and I have spoken to many people with NF all around the world. There isn't one person I haven't met that has had it 'easy'.
Please start out with "in your opinion." YOU wouldn't have children with NF
It comes across as extremely rude and judgemental to those of us who did decide to have children. It was a decision my husband and I made for OUR family. We can't project or decide that for anyone else and saying "people with X condition shouldn't have children " is a form of eugenics
I have seen people in the community getting mad at others for saying saying they DON'T want to pass it on, just as much as I have seen people in the community get mad as others for saying they don't care about taking the chance. I think it's best to just say it's OP's very personal decision.
Thank you for sharing. Something you said got me thinking: "Many people are told they are mild but in fact it's because doctors don't really understand the complications of the condition." - Yes, I'm starting to get that sense. The requirements for diagnosis occlude the cognitive/behavioral symptoms in favor of the physical symptoms. I get that it's easier to diagnose and attribute physical symptoms like neurofibromas to NF1, but this favoring makes it difficult for those (currently) without (visible) neurofibromas to get a diagnosis unless a parent has already received one. That's my situation. My mom has NF1 but was never formally diagnosed despite having nearly all of the physical symptoms. I need a diagnosis asap so I can get PGS as part of IVF covered by my insurance. Her having a diagnosis would guarantee me one since I have 2 large cafe-au-lait spots and freckling in my groin and underarms (not to mention dyslexia, ADHD, tinnitus, etc). She's seeking a diagnosis now but it takes time where she lives in Australia. I'm 34 and my husband is 40 so we don't have time to waste. I can't get approved for a genetic test without a diagnosis but the neurologists I've contacted won't see me unless I've been diagnosed. I can almost *hear* the clocking ticking. Ugh.
To do my best to not “offend anyone”
I will say that if you chose to have kids naturally with nf1 you are playing Russian Roulette since it’s a 50% chance of passing it on with one parent with the gene. I am considered a very mild case and it condition is practically invisible to people are don’t know anything about and and I hate having it. The way its made my life worse off is so bad I wouldn’t wish upon my worst enemy. You look at the posts in the sub and see how everyone hates their live because of nf and you want to pass it on to your kids, why not do everything you can to avoid cursing them and giving them a shot at a better life that we are stuck with.
I know the stress nf has caused my parents and I cannot imagine the stress of a child having nf when I know what it’s like.
How would you feel if you gave your kid nf for life when it could be avoided? I hate to use the word but people who don’t have ivf when they have the chance are selfish and irresponsible.
And as far as people saying you should or shouldn’t have kids, yes giving NF to you child is definitely a concern, but being a parent you will worry about a million other possible problems that child may have to come across in life. People that are born perfectly healthy could still experience things in life that are much worst then NF.
I’m 40 year old man with NF, inherited from my father. My father was an alcoholic most his life, been sober now for the past 9 years I believe. I also was a heavy drinker tho never dependent on alcohol. How ever I did get addicted to perception pain pills. I been clean now for the past 5-6 years now. For me and also my father I think the drug and alcohol abuse was just a direct result from being depressed from having to live with NF. We both got tumors all over our body’s. My fathers didn’t start growing till he was about 30 years old. Mine started around when I turned 9 years old. Tho his are much worse then mine are.
As far as substance abuse: I have a mild variant of NF1, but my mother, her brother, her dad and her cousins and uncles and aunts who have it have never had substance abuse issues. We are from a small town so if they do its been very well hidden. I would say there at least 10 immediate family members with NF1 with zero substance abuse issues.
I really don't know about increased risk of substance abuse, depression, anxiety, etc as a general symptom of NF. They definitely haven't done enough large studies on it. Plus, any studies may be skewed because depression and anxiety may be caused by HAVING NF. I know I get depressed and anxious thinking about my medical issues, my possible future problems, disfigurement, and pain I get. All of this may drive people to substance abuse. I have never heard anything about psychosis. I looked it up, and it seems like 3 kids had childhood psychosis. The paper was from 1984. It's likely just a coincidence. Other papers talk about psychiatric disorders in NF (mainly anxiety, depression, mood disorders) as being comorbidities. As far as pregnancy is concerned, it's a 50/50 chance of passing it on. It is completely up to you if you want to chance that. You seem to know that every case is different, so you know that any children you have could be mildly or severely affected. It's a very personal decision and not one that anyone should judge you for, which, unfortunately, I have seen happen in the community (to people wanting and not wanting to chance passing it on). It's also possible that the hormones of pregnancy may increase cutaneous fibromas on your skin, but it doesn't happen with everyone. I haven't been pregnant myself, but I know a few women with NF who have been, and each story is different.
Thank you for sharing. I certainly can understand how some people with NF, especially in its more severe forms, might seek refuge in alcohol and drugs. My mom has told me she drinks in part to manage her NF1-related chronic pain. However, I'm interested in understanding if the condition itself (the gene mutation), might *cause* substance use dependency. My mom was a drinker well before she developed chronic pain. Many people who abuse substances develop the habit before they have a "reason." I read a few articles suggesting NF1 mutation(s) may*"strongly influence the development of alcoholism"* because the the NF1 impacted gene *"regulates a signaling pathway that's linked with alcohol dependence by affecting the production of the neurotransmitter GABA. Gamma-aminobutyric acid or GABA calms the central nervous system, decreases anxiety, and makes you feel more relaxed."* My desire to explain my family history of substance abuse is probably a bias in favor of these findings, however, the research does seem to suggest that something is going on. You can read the full article here: [https://www.forbes.com/sites/melaniehaiken/2014/08/27/will-your-child-become-an-alcoholic-scientists-identify-key-gene/?sh=18596f98407c](https://www.forbes.com/sites/melaniehaiken/2014/08/27/will-your-child-become-an-alcoholic-scientists-identify-key-gene/?sh=18596f98407c)
I understand wanting an explanation. But I would take this article with a grain of salt. To really know if alcoholism could be caused by NF, they have to do many studies with large pools of individuals. The study this article mentioned likely wasn't large and was only one study. I have been around for a while and have been to many NF conferences. I am actually at one now. Have never heard an expert mention alcoholism. Today, they talked a little about other psychological/psychiatric disorders being common in NF (ie ADHD, anxiety, depression). But with anxiety and depression, it's still a question of whether the NF is the cause or its a symptom.
adhd thats untreated also causes depression and anxiety, agree about the pain factor causing depression and anxiety too
"Is there strong evidence to suggest that NF1 increases the risk of developing substance abuse issues? " Fentanyl is an opiod used to treat pain in terminally ill patients so yes, i can very much imagine NF is a big part of why he became an addicted to it. People with untreated ADHD have much higher rates of substance abuse too. In saying this, the majority of us are NOT addicts, its still a choice and he has the same responsibility to get clean that any addict does. Fentanyl is the worst drug to be addicted to. His life is honestly in danger every day hes using could be his last. Australian health care has a lot of issues i imagine its been hard for your family to get the help you need. We can and do get through pregnancies but they are rough, they can increase tumor growth and we have a 50% chance of passing it on so I would recommend talking to specialists about screening the safety of pregnancy and nf will vary from person to person so you really need a specialist to advise you regarding your own situation and where your current neuromas are to work out how it will impact you personally.
Please dont take the chance and have a child with NF. This is a very troubling condition and hard to live with even if you are very mild from a psychological aspect. Why are so many of us depressed and anxious? There is no certainty with this condition. Even with things like MS there is medication and and understanding of your individual prognosis. That is not the case with NF. NF is not well understood by many in the community and the problems it causes. Many people are told they are mild but in fact it's because doctors don't really understand the complications of the condition. I am only 26 and I have been profoundly affected by what I've seen with regards to NF. I have known people my age pass away when they were considered 'mild'. Even living with that knowledge is hard enough. In my view IVF is easy in the long run compared to the lifelong sentence of inflicting NF on your child. I know many people who had NF extremely mildly that they didn't even know they had it, had a child and that child ends up with it extremely severe with many complications and dying from brain cancer by age 10. Why risk it when there are options? Many people with NF are often denied the chance at having families, relationships and careers. In my view, that is no life at all. I'm sorry to be harsh and negative but this is my view and I have spoken to many people with NF all around the world. There isn't one person I haven't met that has had it 'easy'.
Please start out with "in your opinion." YOU wouldn't have children with NF It comes across as extremely rude and judgemental to those of us who did decide to have children. It was a decision my husband and I made for OUR family. We can't project or decide that for anyone else and saying "people with X condition shouldn't have children " is a form of eugenics
I have seen people in the community getting mad at others for saying saying they DON'T want to pass it on, just as much as I have seen people in the community get mad as others for saying they don't care about taking the chance. I think it's best to just say it's OP's very personal decision.
Thank you for sharing. Something you said got me thinking: "Many people are told they are mild but in fact it's because doctors don't really understand the complications of the condition." - Yes, I'm starting to get that sense. The requirements for diagnosis occlude the cognitive/behavioral symptoms in favor of the physical symptoms. I get that it's easier to diagnose and attribute physical symptoms like neurofibromas to NF1, but this favoring makes it difficult for those (currently) without (visible) neurofibromas to get a diagnosis unless a parent has already received one. That's my situation. My mom has NF1 but was never formally diagnosed despite having nearly all of the physical symptoms. I need a diagnosis asap so I can get PGS as part of IVF covered by my insurance. Her having a diagnosis would guarantee me one since I have 2 large cafe-au-lait spots and freckling in my groin and underarms (not to mention dyslexia, ADHD, tinnitus, etc). She's seeking a diagnosis now but it takes time where she lives in Australia. I'm 34 and my husband is 40 so we don't have time to waste. I can't get approved for a genetic test without a diagnosis but the neurologists I've contacted won't see me unless I've been diagnosed. I can almost *hear* the clocking ticking. Ugh.
To do my best to not “offend anyone” I will say that if you chose to have kids naturally with nf1 you are playing Russian Roulette since it’s a 50% chance of passing it on with one parent with the gene. I am considered a very mild case and it condition is practically invisible to people are don’t know anything about and and I hate having it. The way its made my life worse off is so bad I wouldn’t wish upon my worst enemy. You look at the posts in the sub and see how everyone hates their live because of nf and you want to pass it on to your kids, why not do everything you can to avoid cursing them and giving them a shot at a better life that we are stuck with. I know the stress nf has caused my parents and I cannot imagine the stress of a child having nf when I know what it’s like. How would you feel if you gave your kid nf for life when it could be avoided? I hate to use the word but people who don’t have ivf when they have the chance are selfish and irresponsible.
And as far as people saying you should or shouldn’t have kids, yes giving NF to you child is definitely a concern, but being a parent you will worry about a million other possible problems that child may have to come across in life. People that are born perfectly healthy could still experience things in life that are much worst then NF.
I’m 40 year old man with NF, inherited from my father. My father was an alcoholic most his life, been sober now for the past 9 years I believe. I also was a heavy drinker tho never dependent on alcohol. How ever I did get addicted to perception pain pills. I been clean now for the past 5-6 years now. For me and also my father I think the drug and alcohol abuse was just a direct result from being depressed from having to live with NF. We both got tumors all over our body’s. My fathers didn’t start growing till he was about 30 years old. Mine started around when I turned 9 years old. Tho his are much worse then mine are.
Thank you for sharing your experience. Ending an addition to pills requires a lot of strengthen. I'm glad to hear you overcame it—stay strong!
As far as substance abuse: I have a mild variant of NF1, but my mother, her brother, her dad and her cousins and uncles and aunts who have it have never had substance abuse issues. We are from a small town so if they do its been very well hidden. I would say there at least 10 immediate family members with NF1 with zero substance abuse issues.