The GENETIC FACTOR & talking to sons about the condition

[Skjaldborg]

Hi All,

Since Peyronie's Disease may have a genetic component, how do fathers approach this subject with their sons, if at all? Although it's an awkward and embarrassing subject, do those of us with the disease do our sons a disservice if we don't mention that they may be at risk for it? What if a young man is injured during sex, masturbation or sports, notices symptoms but doesn't tell anyone for months or years and thus never gets treatment? We might tell our sons about a family risk for heart disease or diabetes, but what about sexual health?

I don't have kids yet but as I've been working on a mass mailing awareness project for this disease, I thought to myself, "here I am telling perfect strangers about this disease, would I have the nerve to discuss this if I have a son one day?"

Has anyone on the forum discussed this with their sons? How did you do it?

-Skjald

[LWillisjr]

My boys are older...... in their 20's.  I have a son and two son-in-laws. I consider them all my sons. My wife and I sat down with each couple (boys and spouse) and told them the whole story. Explained what Peyronies Disease is, symptoms, etc. Told them didn't know if it was genetic, but that they needed to know.

Now as a side note. My wife and I have always been open about discussing sex with all our children WHEN WE RECOGINZED THEY WERE AT THE RIGHT AGE TO UNDERSTAND (1 son, 3 daughters). I realize this can be very embarrassing for some, but we made it a comfortable discussion in our home when the kids were age appropriate. Wife and I even sat down and covered the details of sex with each of the couples prior to them getting married. Wife and I do some counseling through our church. You would be amazed at the couples who think they know how to have sex........ but don't have a clue. That's another post for another day.

I feel it is important that we all tell our sons about this condition. We don't have to scare them, and we don't know if it is genetic, and we don't have to tell them that we have it. But we do need to tell them for their awareness. How did each of us feel when we found out we had a specific male disease that we have never heard of before? So yes I am a STRONG advocate for telling them from an awareness perspective. Even if we can't do anything to avoid it, how many of us would have been more proactive at the time had we been more keenly aware and understood our condition?

Yes..... tell your sons, and your friends.  

[Hawk]

I have mixed feelings.  For starters most of our sons are in the unlikely to encounter Peyronies Disease category for a decade or more.  By then it may be a far different topic.  Dispensing the suggestion of a link might cause more worry and obsession over changes in penis angle, firmness, curve, or even use.  It could be counter productive to our objective of our son's ultimate happiness.  Instead it might expose them to excessive concern over a small risk, a risk they can do little or nothing about.  How does the information even help them?

It seems like the catch 22 of blanket genetic testing for diseases we cannot treat or prevent.  What is the point?  Enjoy life and cross that bridge if the time ever comes.

[BentYoung]

As a young man in my early twenties, I did the opposite - I approached my father and asked about Peyronies Disease. No doubt in took a lot of nerve and the convo was less than comfortable but I found out that he has been suffering his whole life with the disease. I must say I would have been grateful if he told me about this as early as possible for me to take it seriously (early teens). I could have treated it aggressively earlier and wouldn't have had to find out the hard way - pain with sex. I have been treating this aggressively for years now, and it looks like surgery is the only option now; had I been 12 or 13, I may have responded to the oral supplements and saved myself years of mental torment. TELL YOUR SONS ASAP!    

[Skjaldborg]

Some good points Hawk; it's true that you don't want to cause too much worry. But I got this at age 30 due to a very minor injury and frankly, it's a very different ball game when you get this at my age (when you're in perfect health) as compared to 50 or 60. If I had known I was at risk for this, or even knew what Peyronie's disease was, I would have been more careful and probably would have gotten on pentox earlier when symptoms arose. I would gladly have had slightly more careful sex over the years so I could enjoy even just a few more years of having a normal penis and being free of the anger and melancholy I sometimes feel. Furthermore, I think isolation causes more worry and fear. I can just imagine someone's son getting injured in football practice, seeing some things happening down there and going into a panic. What if instead he thought to himself, "Dad told me this might happen. I'm going to the doctor right away."

I think lwillisjr has a point about being open about sex subjects in general with our kids. Obviously you don't want to scare them and it must be age appropriate, but arming them with information can only be a good thing.

-Skjald

[peyroninsidepglans]

If the odds are 1 in every hundred men getting this crappy disease is correct, then the fact that my father has pyronies disease aswell and quite bad I must say from what my mum and dad told me.

It has to run in the family to an extect born with poor blood flow down there or something I don't know, but the thing is only after I told my mum and dad somethings wrong down there I'm not getting erect ect , until mum told me dad has the same problem I wish they had told me earlier maybe I wouldnt have been such a sex maniac and looked after myself better Oh well cant change it now, I hope they come up with a cure for this damn thing I really don't want an implant

[LWillisjr]

They think it may be more like 10 out of every 100 men.

[BrooksBro]

I believe there is a genetic component that predisposes some of us to developing this condition.  It is more of improper healing after an injury.  Perhaps it also makes us predisposed to an injury.  I do not know that this has been validated through research to identify anything such as a "peyronies gene."  There are a group of similar conditions involving other body parts, such as duyputrens and lederhosen, which have nothing to do with wild sex.  

I further believe engaging in sex with a weakened erection (from erectile dysfunction) may result in sufficient trauma for the primary injury to occur.  It appears to me that the two conditions coexist often enough, with ED much more common, that I do not think peyronies is always the cause of ED, but it can be.  I believe ED often preceeds development of peyronies.  But, not all men with peyronies have ED.

[BentYoung]

I agree completely. As a 24 year old with Peyronies Disease since before I can remember, I recall having the same conversation with my father and mother. They seemed to understand almost immediately and dismissed the problem as "oh that" ya your father and I have had that conversation many times. "That is no big deal" etc.  There is without a doubt a genetic component to this disorder. I think that many suffers don't fully realize how much of an impact genes have on this nightmare. I am living proof that genes play a significant part .  

[Dabak]

My symptoms started last year after a bout with epididymitis, and got much worse after a second bout this year.  I've started with the vitamin E and Pentox, but the symptoms have been getting worse instead of better.  Haven't bought the VED or started Viagra yet though.

After looking at this forum and doing some Google research, I realized something.  I seem to have a number of the symptoms that characterize Marfan's syndrome (not the more extreme symptoms, however).  So this seems to be a connective tissue problem with me, although it might have been triggered by inflammation.  How many out there have the following: (see Wikipedia - Marfan syndrome)
- sleep apnea, hernias (I've had to have multiple repairs), leaky heart valve (mitral valve prolapse), narrow thin face, teeth crowded, flat feet, high palate, etc.  I've also had disk problems (blew one out, and now some others are starting to bother me).  This all makes me sound like a wreck, but for the most part I'm doing OK.  

I've always wondered if I had some connective tissue issue, what with the hernias and the blown disk in my back.  Didn't realize it might hit me below the belt....

[boomerang]

Is it genetic or familial? I am wondering now if it is an infection passed from parents to children maybe even before birth.  My daughter has teeth problems in that she has 12 or so adult teeth missing.  These teeth are apparently formed before birth so the infection would have had to have occurred then if so.

I have two adult teeth missing but this does not explain why my daughter has so many teeth missing. If it were genetic then I would expect her to have had two teeth missing also.  My wife has no history of missing teeth in her family.

Many of my related symptoms occurred very early in my life so I would guess that I could have got infected early.  I recognise many of my mother's symptoms in myself but is it genetic or infective? That is the question to be answered.

In the end there are many diseases that have turned out to be infection rather than what was commonly thought to have been the cause.

Take Malaria (thought to be caused by bad air, which is what it means) found to be caused by an infection passed on by mosquitoes by Sir Ronald Ross (1898).
And Cholera (thought again to have been caused by bad air) was found to be an infection in the drinking water by DR John Snow (1854).
and Ulcers (previously thought to have been caused by stress until DR Marshall and Dr Warren, the Nobel Prize winners 2005,  proved they were caused by an infection of the stomach by Helicobacter Pylori.
And again Cancer of the Cervix caused by infection by a wart virus (human papilloma virus) for which young girls are now vaccinated against.

Tests can be applied to a condition to see if it is genetic or not because genetically transmitted diseases follow mathematical laws (so I am told).

Perhaps someone needs to determine this.  If you are out there and listening here is a good project for a master's degree.  

This would be a very useful answer.

[Woodman]

I am by far not even close to being well versed in genetics but I have tryed to look back at my family to see if I could make a genetic connection on how I mite have gotten Peyronies Disease too.

I started life with hypospadia witch is being born without a complete urethra. Three surgeries to complete my urethra. I ve had and have numerous things wrong healthwise over my life. I am 37 now and have had Peyronies Disease for 3 yrs now. I got Peyronies Disease and achalasia 2 months apart. Achalasia is where your lower esophageal sphinter or valve above your stomach stops working and the lower third of the espohigous is paralyzed causing a person not to be able to eat or drink it gets worse as the disease progresses. I had to have a Heller myotomy in July 2008. This is where they go in and cut the valve paralyzing it so nourishment can pass the best it can. In Sept of 2009 I got the first signs of Corporal Tunnel just got confirmed last month and have to have surgery on both hands. In two years I had all three of these inflammation and auto immune disorders happen.

My father or brother never had any of these problems. I asked my mother if my father ever had anything like it or if she knew anyone in her family. She told me no. I got Peyronies from a injury so I asked my brother if he had any accidents sexually in his time or any problems. He told me he did one time about ten yrs ago with his wife. He told me he felt a little pull or pop and his penis hurt. He said he just abstained for about 6 weeks and the discomfort went away and he was fine with no complications.

Not that I am even remotely right but I think it has to do with dominant and recessive genes. Maybe even skipping generations like Alzheimer's and twin births. I think I have some kind of auto immune systematic inflammation problem cause 3 instances in three years for me seems a little more then just coincidence.

It has so many diffrent possabilities for its orgin its a little overwhelming sometimes.

[slowandsteady]

I was just notified about a new report from 23andme on keloids, which result from abnormal scarring:

The process by which the skin and other organs repair themselves after injury is a complex series of precisely orchestrated biochemical events. There are many factors—genetic and non-genetic—that can affect or interrupt this process and lead to abnormal scarring. One common scarring problem is keloid—the formation of dense, painful, and persistent raised scars that extend beyond the boundaries of the original injury. Keloid is especially common in people with African, Asian, Hispanic or Mediterranean ancestry and occurs about 15 times more frequently in darker skinned individuals than in those with lighter skin.

I have moderately higher odds (1.8x) of keloids, having a CT for SNP rs873549.

[crashbandit]

I think I have some kind of auto immune systematic inflammation problem cause 3 instances in three years for me seems a little more then just coincidence.

It has so many diffrent possabilities for its orgin its a little overwhelming sometimes.

I'm starting to think the same thing, I'm just gonna be one of those people who get sick and injured all the time no matter what I do. I was talking to my father just on the weekend and we were discussing some of my health issues and he said I have what hes got, an auto immune problem, crap just dosen't heal properly for us. How can people battle an auto immune disorder? or even diagnose it?

I have a hunch I have problems with circulation, because my hands and feet get easily cold and I have high blood pressure. This is one reason why I'm considering pentox now and will probably start it very soon.  

[skunkworks]

I've had a bunch of issues with autoimmune conditions, hair loss, psoriasis, eczema, peyronies and even arthritis (at 25). Cutting out grains, dairy, potato and beans cleared most everything up, but the arthritis didn't go away until I stopped eating tomato for some weird reason...

Low dose naltrexone is also meant to help with autoimmune conditions.

[ken]

Just a thought, if you're still hesitant about talking specifics -- perhaps it would be enough to say "you need to know there is some family history of Peyronies Disease."

[newguy]

Maybe discussions of avoiding certain sexual positions (woman on top) and not going into detail about the condition itself would be as helpful. It would potentially reduce the chance of experiencing peyronie's first hand, but would not burden a youngster with knowledge of a condition that they might never get, but could be disturbed by.

Really, I suppose there is no right or wrong approach, as it's difficult no matter what. The great irony of peyronie's disease will be that once an ultra effective treatment comes along, everyone will come out of the woodwork and people won't shut up about the condition!!

[George999]

Just to share with you my current theory, and it is only that, a theory.  I don't claim to be infallible, but I keep trying to refine my understanding of all of this in order to better find solutions.

1)  I believe the first step in these sorts of diseases is GENETIC.  For one reason or another, be it high blood sugar, a rogue virus, bacterial infection, who knows what, genetic damage occurs.

2)  Due to genetic damage the cells in question cannot efficiently process glucose.  Thus the GENETIC problem becomes a METABOLIC problem.

3)  Due to inability to efficiently process glucose, the cells become vulnerable to stress.  They are literally living on the edge and any trauma will send them over.  Once trauma occurs, be it from physical injury, a drug side effect, infection or whatever else, they become inflammed.  Thus the METABOLIC problem turns into an INFLAMMATORY problem.

4)  When inflammation becomes chronic and does significant damage, the immune system which is assigned by the body to clean up the damage can actually begin to create antibodies to the cells themselves.  These are known as "autoantibodies" and they open the door to a full blown autoimmune attack.  Thus the INFLAMMATORY problem becomes an AUTOIMMUNE problem.

I suspect that this a rough description that could apply to a number of degenerative diseases or syndromes.  People wonder is this disease genetic, metabolic, inflammatory or autoimmune?  Perhaps the correct answer is "all of the above".  They are in reality all tied together.  

My personal response to this is:

1)  Vitamin D3.  Vitamin D is a key genetic modulator.  Without enough vitamin D, cells are more vulnerable to genetic mutation.  And I am convinced that once adequate vitamin D is restored, genetic mutations can, over time, be reversed.  That is way I am determined to monitor my vitamin D levels and keep them optimal.

2)  Blood sugar.  High blood sugar can cause the kind of genetic damage that results in insulin resistance and glucose starvation for affected cells.  For this reason I am trying to control my serum glucose levels with a healthy diet and appropriate supplements.

3)  Vitamin B5.  Vitamin B5 can allow insulin resistant cells to efficiently burn fatty acids rather than having to depend on glucose.  For this reason I am taking large amounts of vitamin B5.  Acetyl L Carnitine is also useful in promoting this process.

4)  OF COURSE, I am also taking Coenzyme Q10 in the form of Ubiquinol which protects the cellular mitochondria from excessive oxidative stress which can be created by glucose resistance issues.

5)  I spent years on Pentoxifylline which reduces inflammation by modulating immune response and perhaps by improving blood flow with its supply of glucose, fatty acids and oxygen to starved cells under stress.  I am off of it now as things have improved significantly and continue to improve and the Ubiquinol and other strategies are doing the job.

6)  I am just beginning to take 50mg of DHEA daily.  I do NOT advise younger guys here to try DHEA without close physician over sight.  If you get your DHEA levels too high, the result can be very bad.  Don't take the risk.  But for us older guys, DHEA is a steroid and it can mod down the immune system in a similar way to pharmaceutical steroids like Prednisone.  Older guys (60+) are typically low on DHEA and have plenty of room to supplement.  Never the less, I plan to request that my levels get tested after a few months just so that I don't risk getting mine too high, AND to make sure that I get them high enough.

7)  Some guys here are having success with Celebrex in knocking down Peyronie's inflammation.  I am beyond that point right now, but for anyone having a lot of pain, Celebrex might be helpful.

What is working for me may well not work for you.  Each person is unique.  My point is only to share what my thinking is at the present time and how that is shaping my response.  I think the best approach for all of us is to try and keep on trying and never, never give up.   Don't waste time on what doesn't work and hang on tenaciously to what does work.  The place to start is with those treatments that have evidence behind them such as independent research studies and treatments that have obviously helped many guys here on this forum.  In this post I have discussed potential oral treatments as they relate to what I see as being the disease process.  That is by no means intended to write off non-oral treatments which can also be very effective.

 - George

[hunchback]

i knew what it was as soon as i got it, so i had an appointment with a urologist in less than 2 weeks. i have been thinking about how or when to tell my teen son what to watch out for in case he has problems. i know i read about it somewhere a long time ago, and i'm glad i figured it out quickly. has anyone ever heard of a good sex eduction type of book for teens that includes a good description/warning about peyronie's?

[LWillisjr]

There are way too few books on Peyronies Disease. I don't think there is anything better than you having this discussion with your son yourself.

When I found out I told my son, and my two son-in-law's. There is nothing better then hearing first hand experience.

[hunchback]

When I found out I told my son, and my two son-in-law's. There is nothing better then hearing first hand experience.

i don't mind talking sex education with both my kids. my wife was too squeamish to talk to my daughter before she started her period (at 10!!) but i had talked to her about the whole thing ahead of time and gave her really good books to read.

my son however was one of the screaming "i don't want to hear about it!!" kind of kids. i still gave him some really good books to read. he is only 13 so i guess i need to approach the subject eventually. 1. it is difficult for me to tell him that i have Peyronies Disease; 2. the kid always shuts me down.

maybe i'll just write a book

[qweeny]

Hello, my and my partner are trying to conceive and we have already discussed how we would approach it should we have a son. My partner spoke to his dad about it, he's dad does not have peyronies, but he has that similar thing in his hand? Can't remember the name, but it's thought that Peyronies could be related, so there may be a genetic component for us.

We both agreed that we would talk about it with our sons should we have them. I think honesty and information is good along with positive and strong role models (the dad that has been through it and the mum who has too) and just the advice to take it easy and take care when having sex.

Of course, this will be in the future and a lot depends on who our sons are and how they would take something like that, but we have always known that we will be very open with our kids (boys or girls) about sex in general.  

[james1947]

My mother informed me that my father (passed away in 1990 at the age of 68) had Peyronie's (she didn't know the name, just the facts) that begone after a prostate surgery at the age of 60. She mentioned the facts and that my father was very depressed because of that and maybe this was one of the factors for his hart deceases. She told me that when I was 58 and begone relation with a much younger woman than me. Unfortunately what she told me went out of my head, I suppose I didn't wanted to know abut. If I was paying attention and making a web research to find this site, I suppose my situation today was different. I get Peyronie's at the age of 61 three years ago, also after a prostate surgery, TUNA.

I think Peyronie's have a genetic factor and also connected to Deputien's. I have scar nodes on my left palm from the age of 48. I have attributed them in the beginning to hard hand work, but is Deputien's. For my good luck, they progress halted after 2 years of development.

My son living in the US and me in the Far East, next time I will meet him, I will definitely tell him about Peyronie's in details, he is now 38 year old.
James

[dioporcolorisolvo]

My father has Duputrien, i've peyronie.
But he was 55 years old when Duputrien came, i'm 28 years old and i've peyronie.
It's the life. Someone has luck in the life, somebody else not.
Nature doesn't care about human desires.  

[qweeny]

My partner's father also has Duputrien. And he also developed this late in life, while my partner was 29 when diagnosed.

[dioporcolorisolvo]

Dio:

Received your PM this morning. Tried to send you an answer, but it did not go through as it said your inbox was full.

So, when you get this post, you should delete as many of your inbox messages as possible to allow for incoming PMs.

Old Man

ok, thanks...i've done..

[George999]

Read this to understand how amazing this process is whereby we end up with these diseases -> http://www.nytimes.com/2012/09/06/science/far-from-junk-dna-dark-matter-proves-crucial-to-health.html?pagewanted=all

and -> http://www.dailymail.co.uk/sciencetech/article-2198839/The-dark-matter-DNA-revolutionise-medicine--scientists-written-junk.html?ito=feeds-newsxml

[skunkworks]

Hi All,

Since Peyronie's Disease may have a genetic component, how do fathers approach this subject with their sons, if at all? Although it's an awkward and embarrassing subject, do those of us with the disease do our sons a disservice if we don't mention that they may be at risk for it? What if a young man is injured during sex, masturbation or sports, notices symptoms but doesn't tell anyone for months or years and thus never gets treatment? We might tell our sons about a family risk for heart disease or diabetes, but what about sexual health?

-Skjald

Personally I think your time would be far better served via working toward prevention. By that I mean educating them about diet, avoiding grains, sugar etc and living a health lifestyle that will avoid risk factors like diabetes.

No need to mention peyronies.

[LWillisjr]

Hi All,

Since Peyronie's Disease may have a genetic component, how do fathers approach this subject with their sons, if at all? Although it's an awkward and embarrassing subject, do those of us with the disease do our sons a disservice if we don't mention that they may be at risk for it? What if a young man is injured during sex, masturbation or sports, notices symptoms but doesn't tell anyone for months or years and thus never gets treatment? We might tell our sons about a family risk for heart disease or diabetes, but what about sexual health?

-Skjald

Personally I think your time would be far better served via working toward prevention. By that I mean educating them about diet, avoiding grains, sugar etc and living a health lifestyle that will avoid risk factors like diabetes.

No need to mention peyronies.

While agree on education in regards to good health and eating habits, wouldn't it also make sense to educate other men about Peyronies Disease. They may or may not be at risk. How many of us knew NOTHING about Peyronies until we were diagnosed with it. I for one am all for educating all men at least the knowledge about what Peyronies is. Sons, fathers, brothers, friends, etc. They don't have to know I had it, but they need to be aware.

[skunkworks]

Hi All,

Since Peyronie's Disease may have a genetic component, how do fathers approach this subject with their sons, if at all? Although it's an awkward and embarrassing subject, do those of us with the disease do our sons a disservice if we don't mention that they may be at risk for it? What if a young man is injured during sex, masturbation or sports, notices symptoms but doesn't tell anyone for months or years and thus never gets treatment? We might tell our sons about a family risk for heart disease or diabetes, but what about sexual health?

-Skjald

Personally I think your time would be far better served via working toward prevention. By that I mean educating them about diet, avoiding grains, sugar etc and living a health lifestyle that will avoid risk factors like diabetes.

No need to mention peyronies.

While agree on education in regards to good health and eating habits, wouldn't it also make sense to educate other men about Peyronies Disease. They may or may not be at risk. How many of us knew NOTHING about Peyronies until we were diagnosed with it. I for one am all for educating all men at least the knowledge about what Peyronies is. Sons, fathers, brothers, friends, etc. They don't have to know I had it, but they need to be aware.

I'm with Hawk on this one:

I have mixed feelings.  For starters most of our sons are in the unlikely to encounter Peyronies Disease category for a decade or more.  By then it may be a far different topic.  Dispensing the suggestion of a link might cause more worry and obsession over changes in penis angle, firmness, curve, or even use.  It could be counter productive to our objective of our son's ultimate happiness.  Instead it might expose them to excessive concern over a small risk, a risk they can do little or nothing about.  How does the information even help them?

It seems like the catch 22 of blanket genetic testing for diseases we cannot treat or prevent.  What is the point?  Enjoy life and cross that bridge if the time ever comes.

[George999]

I think it is EXTREMELY important to be aware that MOST genetic diseases are preventable.  Only "hard wired" genetic diseases that afflict a person from birth are unpreventable.  ALL other genetic diseases occur because epigenetic tags that DISABLE defective genes OR epigenetic tags that ENABLE essential genes get altered.  It is commonly known in scientific circles that these problems with epigenetics occur due to ENVIRONMENTAL forces, in other words, lifestyle, diet, exposure to toxics, etc.  This is why there are numerous cases of IDENTICAL TWINS where one twin is completely healthy and the other has known genetically caused health problems.  That is why the best counsel for our children is to develop and maintain a healthy lifestyle.  - George

[TooYoungForThis]

How can it be genetic? I received mine by microtrauma and masturbating the incorrect way.

Are you telling me my kids could get this if I had some?

[Hawk]

You MAY have triggered it by doing those things.  Peyronies Disease needs more that a penile injury, trauma, or micro-trauma to develop.  If not, at least 50% of the male population would have it.

[james1947]

TooYoungForThis

I don't know how can be genetic, but my father had it at age of 61, I had it at age of 61.
Coincidence? I don't know.

James

[Hawk]

There is a clearly established genetic factor although not a real strong factor meaning your sons are at a somewhat greater risk of Peyronies Disease than the general population but most sons of men with Peyronies Disease will never get Peyronies Disease.  Discussing it with them is an option but consider the individual.  If they are obsessive or a worrier you may cause more problems than you help.  Whatever you do, make the best decision you can for them and not what you personally prefer.

[Norm]

"How can it be genetic?"
If trauma was all that caused Peyronie's, then every man with a micro trauma would get it. They don't. That's because there are so many other factors equally important. Heredity is certainly one of them. This is one of those situations where "if the stars all align", then it will happen. If they don't, you luck out. What can we do? Eliminate as many factors as possible.  

[BillyBob2]

I have been reading this thread from start to finish with HUGE interest thanks to George's in depth discussion of physiological and chemical subjects.  I would never argue against Peyronies Disease having a genetic component.  However, as it has been alluded to, it is not guaranteed that because a person has the genetic factors that he will necessarily develop Peyronies Disease.  From all the posts and the scattering of the ages of Peyronies Disease victims it  appears to me to be clearly evident that the predisposition for Peyronies Disease development is across the age parameters as is hair turning gray.  I know a few guys who's hair began to turn gray in high school yet others who didn't turn gray until mid 40's and were completely white headed by mid 50's.  How I relate this gray hair business to Peyronies Disease is that the age distribution is somewhat similar.  A few get it when they are very young while it becomes far more prominent over age 40.
    I'll look for it but I hope there is a topic on this forum for genetic discussion, physiology discussion, and biochemical or drug discussion talking about Peyronies Disease down on the chemical and cellular level.  Hopefully I'll also find a good outline of what foods to eat and which to avoid so I can do some meal planning.. maybe even a good daily menu... plus which supplements to take, which not to take, and which are synergistic and which not to use together because they may be antagonistic.... anybody want to point me in the right direction
please do so!
   Of particular interest to me is the mode of action of drugs and supplements used for treating Peyronies Disease.

[DO]

That was one of the 1st questions asked by my 3rd uro . "Did your father ever talk about his erections?". My dad did ask me about ED and it was blamed on his blood pressure medications...but that was 30 years ago and it was his blood pressure medication blamed for his heart disease "IHSS". At this point who knows...just make me better!

[BillyBob2]

DO.  That sounds logical for those times.  some 30 years ago I was talking to an older guy who was taking the same medicine my father took for high blood pressure... DOPA.  It was pretty well accepted that this would cause ED.  Unfortunately my dad died shortly after that from a stroke as a result of high bp.  He and I never discussed anything concerning ED, sex, etc.  We just didn't do that sort of thing in our family... had to learn it from the kids I grew up with if it was not taught in school.  Back then an adult wouldn't mention sex or anything "immoral" in school for fear of being banished and ridiculed.

[Hawk]

Certainly a genetic predisposition to a condition doesn't mean you will get it.  In fact it does not even mean you are more likely to get it than to not get it.  It is a risk factor just like age is a risk factor.  

Also, while we (plumbers, cops, truck drivers, computer geeks,) have discussions about Peyronies Disease on a cellular level, it is just that, DISCUSSIONS.  There has been little professional research on this and fewer real answers. resulting from cellular research.  Most focus has been on practical treatment based on a rational guess of what might work, and then following up with a few clinical trials and a lot of anecdotal evidence of what did work when it was tried.

[BillyBob2]

Hawk... terminology or choice of words can be subject to the reader's/listener's use of the words.  A predisposition does not give one a guarantee.  It infers risk or probability...  

[funnyfarm]

One thing I have noticed since joining the forum is guys expend a huge amount of time and energy here trying to figure out WHY they got Peyronies Disease.   Most will never know the full story, and even if they did it would not help at this point.  So sadly it is counterproductive.

Rather, as Hawk pointed out, focus on HOW you can treat it:  Steps you can take right away to get better rather getting caught up in studying why this happened to you.  

Concentrate your effort on being pro-active, and solutions focused and you are bound to see improvements.  

[BillyBob2]

FF. I agree at this point how is irrelevant other than maybe to pass on to others how to prevent it.  All the time I'm spending reading this forum and many articles on the internet are focused on understanding the scar/tissue formation and it's progression as well as the dissolution of the little bugger.  One key question is "why do some self-correct while others get worse?"  IMO, the best we can hope for is to promote healing of the wound and dissolution of the scar in the remolding process.

[Hawk]

A predisposition does not give one a guarantee.  It infers risk or probability...

Certainly a genetic predisposition to a condition doesn't mean you will get it.  In fact it does not even mean you are more likely to get it than to not get it.  It is a risk factor just like age is a risk factor.  

By my reading we said the same thing.

[Litani]

Hi,

I am 49 and I was diagnosed with Peyronie's few months ago.  Until then, I had no idea that this disease existed.  I have a 15 year old son.  Has anyone thought about talking to their son about exercising caution with erect Penis?

On one hand it is a very hard topic to discuss and on the other I would not want my son to go though what I am going through now.

[rellisacct]

It won't get any more simple than this...

10 minutes of awkwardness VS possibly decades of anger, depression, hopelessness

Had someone told me that this could happen, I never would have allowed girl on top and would have been a LOT more cautious in sports

That is a good thought though and I wish more people knew that this was even possible.

[james1947]

The GENETIC FACTOR and talking to sons about the condition - Peyronies Society Forums
43 posts on the subject in the link above
I will merge later the two topics

James

[jackp]

Latini

Yes I have talked to my son he knows my story. Like most men I have no idea of what caused mine.

Don't stop with your son. Tell your adult daughters as well. When my wife mentioned to my oldest daughter we were going she insisted we not go by ourself. She also wanted to know why so my wife told her.  She drove the 150 miles from her home here and then took us to Nashville. Stayed with us the whole time.

When talking to your children tell them in a clinical way what happens. They love you and the embarrassment will soon disappear. Like my daughter told me, "All I want is for you and mama to be happy."

Jackp
http://jackp-penileimplant.blogspot.com

[LWillisjr]

I have told my son and my son-in-laws. I am strongly a proponent for Peyronies awareness.

[TooYoungForThis]

My condition was not just a one-time micro-trauma thing. It was solely caused by me literally crushing the base of my penis when I masturbated 20 times a day. It's not genetic. I did it to myself.