Hey guys,
I'm a 22yr old female living in the Netherlands, recently diagnosed with SM. I think my first cysts occured about 10 yrs ago. As many of you, I was told it was a form of acne and I've always believed it would fade someday. However, during the last few years, my skin started to show more bumps and at the moment I've about 100, most of them on my chest, between my breast, on my back, on my bottom and recently I've also developed some on my arms as well. Every few weeks, I suffer from imflammations, sometimes I am not able to sit or dress normally for weeks. Over the years, my GP has always refused to give me antibiotics or anything, he thinks it is best to wait untill the inflammation fades away (most of the times leaving a dark scar), but it always reoccurs at some other place.
Recently, I moved to a different area and my new GP sent me to a derm right away. My (very young) derm says he has never seen anything like it and he performed a biopsy which resulted in the diagnosis SM. Since he had never heard about it, I was sent home with the message to look it up myself on google. Most of you will understand that I was shocked to discover there is no real cure. Since then, I'm even more worried about how my SM will develop. ATM my skin condition controls a big part of my life because it makes me feel isolated: I try to hide my skin as much as possible, I'm afraid to go to the beach, pool or gym etc. It makes me feel so repulsive I even try to avoid any physical contact. I feel lonely and misunderstood. People around me frequently say that they are jealous of my figure, that they can't understand why I don't feel comfortable in a bikini. It hurts me so much, but I am afraid to tell others about my condition (because I am scared they will view me as some sort of monster).
Untill now, I'm the only one in my family who has SM but I frequently worry what this will mean for my future. At the moment, I reached the point where I think that it would be best not to consider having children as long as I can't be certain they won't develop SM.
For now, my derm has given me two options: start a Roaccutane cure or try a CO2 laser. He doesn't want to try excision because he thinks it will result in too much scarring. My question to you guys is what your experience with Roaccutane is? Is it worth trying it eventhough it has some nasty side effects? I would like to hear you comments on this...I am relieved that this page exists, at least now I know I am not the only one out there XD
I'm a 22yr old female living in the Netherlands, recently diagnosed with SM. I think my first cysts occured about 10 yrs ago. As many of you, I was told it was a form of acne and I've always believed it would fade someday. However, during the last few years, my skin started to show more bumps and at the moment I've about 100, most of them on my chest, between my breast, on my back, on my bottom and recently I've also developed some on my arms as well. Every few weeks, I suffer from imflammations, sometimes I am not able to sit or dress normally for weeks. Over the years, my GP has always refused to give me antibiotics or anything, he thinks it is best to wait untill the inflammation fades away (most of the times leaving a dark scar), but it always reoccurs at some other place.
Recently, I moved to a different area and my new GP sent me to a derm right away. My (very young) derm says he has never seen anything like it and he performed a biopsy which resulted in the diagnosis SM. Since he had never heard about it, I was sent home with the message to look it up myself on google. Most of you will understand that I was shocked to discover there is no real cure. Since then, I'm even more worried about how my SM will develop. ATM my skin condition controls a big part of my life because it makes me feel isolated: I try to hide my skin as much as possible, I'm afraid to go to the beach, pool or gym etc. It makes me feel so repulsive I even try to avoid any physical contact. I feel lonely and misunderstood. People around me frequently say that they are jealous of my figure, that they can't understand why I don't feel comfortable in a bikini. It hurts me so much, but I am afraid to tell others about my condition (because I am scared they will view me as some sort of monster).
Untill now, I'm the only one in my family who has SM but I frequently worry what this will mean for my future. At the moment, I reached the point where I think that it would be best not to consider having children as long as I can't be certain they won't develop SM.
For now, my derm has given me two options: start a Roaccutane cure or try a CO2 laser. He doesn't want to try excision because he thinks it will result in too much scarring. My question to you guys is what your experience with Roaccutane is? Is it worth trying it eventhough it has some nasty side effects? I would like to hear you comments on this...I am relieved that this page exists, at least now I know I am not the only one out there XD
Hi everyone
I’m a 19 years old white moroccan guy , I have SM since i have memory my mother told me that i had natal teeth as i read somewhere there’s some link between those natal teeth and the SM ,i inherited it from my father and he inherited it from his father and their family ,i really hate my self i couldn’t live anymore with this disease ,its spreading within my body and the number of bumps is uncountable almost everywhere in my body ,i could feel them growing under my skin day after day ,and there’s nothing to do just watch them overtaking me ,i have removed two ones from my head when they became huge ,i recently heard about Roaccutane 20Mg that it could slow the spreading process but it has several negatives and i really have no money to buy it regularly ,its price here is about $37,my doctor told me that there is nothing to do unless surgeries ,if i decided to go for a plastic surgeries i think i will need $100.000 or so to remove them all .i heard about the carbon dioxid laser but its impossible to be available in such country like this so i need the visa to go abroad and i need someone help me to go to the Europe
i usually feel isolated and lonely long time ago since i became know what the world is ,it affected me psychologically , i have just got my high school degree and tomorrow is my first day at the university ,you can’t imagine how embarrass i will get. All i can do is just wait for my life to end and make an end to my suffers
now i don’t go to the beach ,the last few summers my friends asked me several times to go with them to the beach every-time i dodge them and i apologize , even my classmates see me freaky weird and nervous ,i have never felt happy ,i keep all the time watching the people enjoying their life and sharing their best moments through the computer’s screen and wondering why im in this world, i’m blaming my father and i really don’t know why he born me if i were him i wouldn’t have even thought to have children ,
i really need someone to talk to and open my heart ,i really hope that they make an isolated island for us ,i remember several times deferent people told me to threat my self i really got embarrassed then , cause i don't know what to say and how to explain them my condition
and you who posted the previous post “NL” please don’t ever think of having children cause my big sister has some few bumps on here axilla and she recently got a baby ,just after a few days after the birth i discovered that he has the same bumps on his body ,they are quite small but i’m certain they will spread over his body, i really love him that’s why i hope he die before its too late ,in addition ,every few weeks i suffer from inflammations in several part of body
i didn't know that there's some people with the same situation unless before some days ago at least it drops some of my fears .
we have to fill complain and send it to the international health organization explaining our condition may be they will look up for some cure ,i see every electronic equipment around me and i figure if just a small amount of the technology wich used to manufacture those things is used to find us a cure could it find it ,im certain that it will but heal people don't ever look at the ill ones they only care about getting money that's what they are all about
i thank everyone who share his experience in this thread and this is my é/màil karim _ sce at live dot company ,i hope you could get it its easy just remove the spaces and be intel,right away after you got it please contact me
I’m a 19 years old white moroccan guy , I have SM since i have memory my mother told me that i had natal teeth as i read somewhere there’s some link between those natal teeth and the SM ,i inherited it from my father and he inherited it from his father and their family ,i really hate my self i couldn’t live anymore with this disease ,its spreading within my body and the number of bumps is uncountable almost everywhere in my body ,i could feel them growing under my skin day after day ,and there’s nothing to do just watch them overtaking me ,i have removed two ones from my head when they became huge ,i recently heard about Roaccutane 20Mg that it could slow the spreading process but it has several negatives and i really have no money to buy it regularly ,its price here is about $37,my doctor told me that there is nothing to do unless surgeries ,if i decided to go for a plastic surgeries i think i will need $100.000 or so to remove them all .i heard about the carbon dioxid laser but its impossible to be available in such country like this so i need the visa to go abroad and i need someone help me to go to the Europe
i usually feel isolated and lonely long time ago since i became know what the world is ,it affected me psychologically , i have just got my high school degree and tomorrow is my first day at the university ,you can’t imagine how embarrass i will get. All i can do is just wait for my life to end and make an end to my suffers
now i don’t go to the beach ,the last few summers my friends asked me several times to go with them to the beach every-time i dodge them and i apologize , even my classmates see me freaky weird and nervous ,i have never felt happy ,i keep all the time watching the people enjoying their life and sharing their best moments through the computer’s screen and wondering why im in this world, i’m blaming my father and i really don’t know why he born me if i were him i wouldn’t have even thought to have children ,
i really need someone to talk to and open my heart ,i really hope that they make an isolated island for us ,i remember several times deferent people told me to threat my self i really got embarrassed then , cause i don't know what to say and how to explain them my condition
and you who posted the previous post “NL” please don’t ever think of having children cause my big sister has some few bumps on here axilla and she recently got a baby ,just after a few days after the birth i discovered that he has the same bumps on his body ,they are quite small but i’m certain they will spread over his body, i really love him that’s why i hope he die before its too late ,in addition ,every few weeks i suffer from inflammations in several part of body
i didn't know that there's some people with the same situation unless before some days ago at least it drops some of my fears .
we have to fill complain and send it to the international health organization explaining our condition may be they will look up for some cure ,i see every electronic equipment around me and i figure if just a small amount of the technology wich used to manufacture those things is used to find us a cure could it find it ,im certain that it will but heal people don't ever look at the ill ones they only care about getting money that's what they are all about
i thank everyone who share his experience in this thread and this is my é/màil karim _ sce at live dot company ,i hope you could get it its easy just remove the spaces and be intel,right away after you got it please contact me
Hi, just to reply to karim_sce. I have SM and I don't seem to have it as bad as some of the others on this post. It is an autosomal dominant disease so in the majority of cases one of your parents had to have it. The thing is not everyone is affected the same way. Just because your nephew has a few bumps now please don't sentence him to death. I know it can be extremely disfiguring and have a huge psychological impact, but trust me, there are far more worst things to suffer from on this planet. Just in case your nephew does have a bad case - at least you'll be there for him. If you can get through high school with this than you can get through anything, huh? :-)
This is my first time posting - so a bit about me... I'm 24 African American (family is from Jamaica) I had a few tiny bumps from about the age of 10, got a lot more tiny bumps throughout puberty and during my pregnancy (my son is 13 months now) the tiny bumps became large hard bumps. They weren't that noticeable while I was pregnant, but when I started loosing the weight they became very obvious - at least to me. I began to get them on my neck and decided to get one biopsied. I actually got my diagnosis last week. My MD even got some of his info about the disease from this page!
Best of luck to everyone
This is my first time posting - so a bit about me... I'm 24 African American (family is from Jamaica) I had a few tiny bumps from about the age of 10, got a lot more tiny bumps throughout puberty and during my pregnancy (my son is 13 months now) the tiny bumps became large hard bumps. They weren't that noticeable while I was pregnant, but when I started loosing the weight they became very obvious - at least to me. I began to get them on my neck and decided to get one biopsied. I actually got my diagnosis last week. My MD even got some of his info about the disease from this page!
Best of luck to everyone
i just discovered this week that i have sm.... i have lived with it since i was a teenager and i thought... they'll just go away by itself..... im in my 27th year and it is still with me... i thought it was another form of acne since i had them when i was a teenager.. so i didn;t really worry about it. now ive notice that it was staying with me longer than it should... so i went to the dermatologist last week... i was a little pissed because they had to do a biopcy to make sure what i have and it caused a lil scarring.... i came back and the dermatologist told me that i have "steatocystoma multiplex".. i was like? what the hell is that?.... when they told me what it is and told me that there is no cure for it and treating it will only minimize the look of it... i wanted to bust out and cry there.... i was soooo sad about it.... i thought there were just going to give me a pill or something.... what's worst is that it's a genetic disorder and i can pass it to my children... and i'm sure of that because when i told my mother about this, she told me that my father and my eldest brother have this diagnosis as well... the dermatologist told me that the only way i can get rid of it is that he has to sink in an electric needle and extract it.... but he recomended that i should just leave it alone and live with it because the needle can cause scarring and may lead to kiloid and it also cost big bucks.... i don't mind spending money because my bumps aren't they're worst because i only have less than 40 bumps on my chest and my lower back area.... i just want to research more on how i can treat it and find a very skillied dermatologist here in san francisco that can extract them out without leaving an ugly scar(i can live with minimal not very obviuos scars). it made me a little depressed and that's why i went here in this blog to just let it out i guess... please reply to my email address if you have some answers for me.... i will greatly appreciate it.
Dear NL,
I found this forum to be of great help to me and I havent been on in quite a while as I have gotten my cysts under control, for the most part. I have struggled with everything NL has said so I want to address what I have found most helpful:
1) Doctors dont know shi*. All of them say the same thing, live with it, or the scarring will be worse. Dont listen to them.
2) If your doctor refuses to excise the cyst, go to an esthetician. I have been working with one for over 3 years who has painstakingly (the pain was mine, mostly) removed probably over 100 cysts from my back, chest, backside, and random other areas. Take a few tylenol or motrin, and deal with the pain. It isnt that bad. I think women will equate it to a brazilian wax.
3) there will be post scarring. deal with it for a few months to a year, depending on your skin. i am asian and it takes longer for me to heal, but the scars do fade. you can use hydroquinone or other fading treatments to accelerate the process
4) i have studied diet fastidiously. our disease is linked closely to hormones, which is why it appears in our puberty. i recommend avoiding meat, soy, and dairy - anything that dramatically alters our hormones. the reality is our food supply is tainted, and our disease, although genetic, is heavily influenced by hormones.
I am almost fully recovered from my SM. I see a few cysts here and there, which i self treat or now enlist my mother to help me. But having tried EVERYthing and having seen the best practitioners in the COUNTRY along with homeopathic remedies, this is my recommendation.
If you have any responses, I will check back periodically to respond. Good luck, and do not believe you have to live with this disease. Modern medicine fails, and I know this having spent countless hours and money finding a cure. Best of luck!!!! I send you all love and hope.
I found this forum to be of great help to me and I havent been on in quite a while as I have gotten my cysts under control, for the most part. I have struggled with everything NL has said so I want to address what I have found most helpful:
1) Doctors dont know shi*. All of them say the same thing, live with it, or the scarring will be worse. Dont listen to them.
2) If your doctor refuses to excise the cyst, go to an esthetician. I have been working with one for over 3 years who has painstakingly (the pain was mine, mostly) removed probably over 100 cysts from my back, chest, backside, and random other areas. Take a few tylenol or motrin, and deal with the pain. It isnt that bad. I think women will equate it to a brazilian wax.
3) there will be post scarring. deal with it for a few months to a year, depending on your skin. i am asian and it takes longer for me to heal, but the scars do fade. you can use hydroquinone or other fading treatments to accelerate the process
4) i have studied diet fastidiously. our disease is linked closely to hormones, which is why it appears in our puberty. i recommend avoiding meat, soy, and dairy - anything that dramatically alters our hormones. the reality is our food supply is tainted, and our disease, although genetic, is heavily influenced by hormones.
I am almost fully recovered from my SM. I see a few cysts here and there, which i self treat or now enlist my mother to help me. But having tried EVERYthing and having seen the best practitioners in the COUNTRY along with homeopathic remedies, this is my recommendation.
If you have any responses, I will check back periodically to respond. Good luck, and do not believe you have to live with this disease. Modern medicine fails, and I know this having spent countless hours and money finding a cure. Best of luck!!!! I send you all love and hope.
Hello all. I'm a 37 yr old male who just celebrated (as if!) my 20th anniversary with SM. It hit me Feb 1990, when I was 17, and just a few months from high school graduation. It killed me. I lived in St Pete, FL at the time and lived my life on the beach. My last summer before my buddies and I all went off to different colleges was supposed to be awesome, nothing but beach volleyball, pools, boats, and girls, but this disease ruined it and really ruined me for a long time.
After the first day a cyst showed, it was an onslaught. The cysts started large and like most, mainly attacked the chest and shoulder blade areas of the back. It took just a few months to be covered with over 100 in my estimation. Also like most, my first doctor swore it was acne and put me on the typical track at the time of PanOxyl to Retin-A to Accutane, with absolutely no results. I knew she was wrong so I stopped going. Later, I went to a different dermatologist who immediately ruled out acne and did a biopsy. That's when I got the diagnosis of SM.
As many of you have experienced, there is very little knowledge of the disease. Dermatology is a very retail kind of health care I've found that caters to teens with acne and middle-aged people looking for the fountain of youth. Dealing with a disease of this rarity and resiliency probably isn't something the majority of derms care to do. That second derm who diagnosed me did attempt some lancing and extraction. It was awful. She did only 4 of the worst ones. It hurt badly, left large puffy masses that turned into scabs, and then after healing, left dark spots (hyperpigmentation as I've read in many of the posts), and scars. This was 1991 so I don't know if the techniques or equipment just weren't very good since it sounds like some of you have had much better luck with extraction procedures in recent years. But I never tried it again after that. I fought the urge for awhile longer to extract them myself, but after developing what I called a super-cyst (basically where multiple cysts in the same small area grow into each other) in the middle of my chest, I fought back and haven't stopped since then.
Unfortunately, this has left a great deal of scarring. Sometimes I regret doing it, but it seemed hopeless anything would fix it due to the genetic nature of it, and the cysts got so bad. The weird thing about mine that seems a bit different than many of the posts that I've read but similar to a few is most of the cysts will refill quickly after extraction and never go away, the nature and location of the cysts can change over time, and the number of them is fairly staggering. Like right now, the middle chest area, which is always the worst, is populated with dozens of very small cysts instead of the big ones I used to get. This started up maybe 5 or 6 years ago. Recently, new ones started popping up higher on the chest and in sparse numbers in the lower rib area. The ones around my neck have also had a tendency for inflammation and react horribly to extraction attempts. I have an absolute monster in the dead front center of my lower neck and trying to hide it with high collar shirts has grown tiresome.
Luckily they haven't strayed much from the torso area, as I've had just one small one on my left cheek for many years and the occasional easily extracted ones in the scrotum (gotta be careful with those though!). But my biggest problem is even if they could treat or even cure it at this point, the skin is so badly scarred that it would still look terrible. Unless they could also fix the skin itself, there wouldn't be much point. But I can say that after allowing this disease to basically destroy the person I was, leaving a pretty depressed and hopelessly cynical shell of a person in its wake, I met some good people who helped me rebuild my confidence and not long after, I found a great woman who I've been married to 10 years. Yeah, everyday I look in the mirror and I'm ticked off, but I can let it go and be happy in all the other wonderful things I have going on in my life. But there's one huge anxiety now...
I have a 4 yr old son who is absolutely beautiful, intelligent, funny, just amazing. He seemed to get just about every good bit of DNA his mother and I had in us. I know most people will say that about their kids, but seriously, I am like almost jealous of how good-looking this kid is. The girls already gravitate to him. So I live in mortal fear that with all that good, he'll have one of the bad parts of my DNA and end up with this disease. I couldn't even imagine how much it would destroy me knowing what I've gone through with it and how it would affect his life. Maybe by then, if he did get it, treatments might be perfected and 100% successful or maybe even a cure. Things seemed fairly archaic during my early stages but laser technology and gene therapy have come a long way since the early '90s. So I try to think about that to ease the anxiety but it will always be there.
As for the genetic line of how I ended up with it, my parents and none of my 4 sisters have it. In fact, the only person in our large extended family who my mom could remember hearing something about a skin problem is my grandmother's brother George. I actually never met him and he passed away some time ago so I never got to confirm that. So unless someone else is hiding it very well, I don't know of anyone else in the family with it. Guess I was just "lucky" I suppose.
So anyway, there's my story. I've never shared it in this kind of a forum but reading the other posts, I couldn't help but feel a bit liberated to do so. I don't know another soul with this personally, but now I kind of feel like I do and I wish you all the best in dealing with it. Sorry for writing so much but this was helpful to me to get it out to other people who can truly understand it. Yeah, we're not dealing with childhood leukemia or something "life-threatening" as some people would say. But speaking for myself, in a way, it was life-threatening because I felt I could no longer be the same person and live the beach life (I'm in Tennessee now, no beaches, lots of lakes and rivers though). So it did kill me so to speak. But at least the new person that was born of this disease has slowly but surely been able to find some peace and happiness.
One last anecdote and I swear I'll be done. The greatest sense of peace I ever had with this disease was the first time my wife and I were going to be intimate. She was so perfect for me, I knew I wanted to marry her the first time I saw her, so I was mortified about showing myself and scaring her away. Well, she was in the bathroom undressing and apparently was mortified herself about showing me "the toe." She had a birth defect where the middle toe and second largest toe on one foot grew together into one super-toe with a bit of an odd curve to it. The nerves were so intertwined, the doctors feared trying to separate them could cause much more harm. So she's had to live with it. Anyway, she came out, sighed, and simply said, "Here's the toe." I looked, kind of laughed inside, pulled off my shirt, and said, "Well, here's the chest." Then our eyes met and there was this special moment of understanding, relief, and joy. Needless to say, we had an amazing night and have kept the good times flowing to this day. Best wishes everyone.
After the first day a cyst showed, it was an onslaught. The cysts started large and like most, mainly attacked the chest and shoulder blade areas of the back. It took just a few months to be covered with over 100 in my estimation. Also like most, my first doctor swore it was acne and put me on the typical track at the time of PanOxyl to Retin-A to Accutane, with absolutely no results. I knew she was wrong so I stopped going. Later, I went to a different dermatologist who immediately ruled out acne and did a biopsy. That's when I got the diagnosis of SM.
As many of you have experienced, there is very little knowledge of the disease. Dermatology is a very retail kind of health care I've found that caters to teens with acne and middle-aged people looking for the fountain of youth. Dealing with a disease of this rarity and resiliency probably isn't something the majority of derms care to do. That second derm who diagnosed me did attempt some lancing and extraction. It was awful. She did only 4 of the worst ones. It hurt badly, left large puffy masses that turned into scabs, and then after healing, left dark spots (hyperpigmentation as I've read in many of the posts), and scars. This was 1991 so I don't know if the techniques or equipment just weren't very good since it sounds like some of you have had much better luck with extraction procedures in recent years. But I never tried it again after that. I fought the urge for awhile longer to extract them myself, but after developing what I called a super-cyst (basically where multiple cysts in the same small area grow into each other) in the middle of my chest, I fought back and haven't stopped since then.
Unfortunately, this has left a great deal of scarring. Sometimes I regret doing it, but it seemed hopeless anything would fix it due to the genetic nature of it, and the cysts got so bad. The weird thing about mine that seems a bit different than many of the posts that I've read but similar to a few is most of the cysts will refill quickly after extraction and never go away, the nature and location of the cysts can change over time, and the number of them is fairly staggering. Like right now, the middle chest area, which is always the worst, is populated with dozens of very small cysts instead of the big ones I used to get. This started up maybe 5 or 6 years ago. Recently, new ones started popping up higher on the chest and in sparse numbers in the lower rib area. The ones around my neck have also had a tendency for inflammation and react horribly to extraction attempts. I have an absolute monster in the dead front center of my lower neck and trying to hide it with high collar shirts has grown tiresome.
Luckily they haven't strayed much from the torso area, as I've had just one small one on my left cheek for many years and the occasional easily extracted ones in the scrotum (gotta be careful with those though!). But my biggest problem is even if they could treat or even cure it at this point, the skin is so badly scarred that it would still look terrible. Unless they could also fix the skin itself, there wouldn't be much point. But I can say that after allowing this disease to basically destroy the person I was, leaving a pretty depressed and hopelessly cynical shell of a person in its wake, I met some good people who helped me rebuild my confidence and not long after, I found a great woman who I've been married to 10 years. Yeah, everyday I look in the mirror and I'm ticked off, but I can let it go and be happy in all the other wonderful things I have going on in my life. But there's one huge anxiety now...
I have a 4 yr old son who is absolutely beautiful, intelligent, funny, just amazing. He seemed to get just about every good bit of DNA his mother and I had in us. I know most people will say that about their kids, but seriously, I am like almost jealous of how good-looking this kid is. The girls already gravitate to him. So I live in mortal fear that with all that good, he'll have one of the bad parts of my DNA and end up with this disease. I couldn't even imagine how much it would destroy me knowing what I've gone through with it and how it would affect his life. Maybe by then, if he did get it, treatments might be perfected and 100% successful or maybe even a cure. Things seemed fairly archaic during my early stages but laser technology and gene therapy have come a long way since the early '90s. So I try to think about that to ease the anxiety but it will always be there.
As for the genetic line of how I ended up with it, my parents and none of my 4 sisters have it. In fact, the only person in our large extended family who my mom could remember hearing something about a skin problem is my grandmother's brother George. I actually never met him and he passed away some time ago so I never got to confirm that. So unless someone else is hiding it very well, I don't know of anyone else in the family with it. Guess I was just "lucky" I suppose.
So anyway, there's my story. I've never shared it in this kind of a forum but reading the other posts, I couldn't help but feel a bit liberated to do so. I don't know another soul with this personally, but now I kind of feel like I do and I wish you all the best in dealing with it. Sorry for writing so much but this was helpful to me to get it out to other people who can truly understand it. Yeah, we're not dealing with childhood leukemia or something "life-threatening" as some people would say. But speaking for myself, in a way, it was life-threatening because I felt I could no longer be the same person and live the beach life (I'm in Tennessee now, no beaches, lots of lakes and rivers though). So it did kill me so to speak. But at least the new person that was born of this disease has slowly but surely been able to find some peace and happiness.
One last anecdote and I swear I'll be done. The greatest sense of peace I ever had with this disease was the first time my wife and I were going to be intimate. She was so perfect for me, I knew I wanted to marry her the first time I saw her, so I was mortified about showing myself and scaring her away. Well, she was in the bathroom undressing and apparently was mortified herself about showing me "the toe." She had a birth defect where the middle toe and second largest toe on one foot grew together into one super-toe with a bit of an odd curve to it. The nerves were so intertwined, the doctors feared trying to separate them could cause much more harm. So she's had to live with it. Anyway, she came out, sighed, and simply said, "Here's the toe." I looked, kind of laughed inside, pulled off my shirt, and said, "Well, here's the chest." Then our eyes met and there was this special moment of understanding, relief, and joy. Needless to say, we had an amazing night and have kept the good times flowing to this day. Best wishes everyone.
Hey guys,
I'm 22 male who was diagnosed with SM somewhere around 2 years ago. At first I went to a normal GP and he misdiagnosed my SM as a normal eczema and prescribed me with a cream which didn't work after a week. Then I decided to go to a dermatologist. He was really good. When I say good, i meant it. He knew that I have SM just a second after looking at my chest. The moment I opened my shirt and showed him my bumps, he rudely and loudly said "OH I"m sorry I can't help you. There is no cure for this as this is genetic" ;-) He even took a syringe needle and poke my bumps without my consent to show my dad that there is yellow liquid inside the cyst which he said is only fat. Although it was painful, but it wasn't big deal for me then, as I had a more painful feeling inside for there is no cure for the disease.
What extra info he told me that I couldn't see anyone talking about is, i'm gonna have this SM until I'm 60 years old (by then I wont even care how many cyst I have as every bumps is going to be covered by wrinkles) and he said he could prescribe me a cream (which based on my experience and smell, it is a sulfur cream) to avoid new bumps from appear. I have some doubt about the cream he prescribed me as not only it caused me inflammation on certain bumps but even now i think i could see new cyst from popping out. But lets not jump into conclusion about the sulfur cream as the result might vary for different individual or it might be me who wasn't using the cream properly as I was studying in boarding school which prevent me on applying it routinely as it cause a really bad and strong smell. He gave me two option, 1) to do surgical excision which going to cause a hole in my dad's pocket. 2) live with it.
I'm the only one who had SM in my family which actually confused me as it should be autosomal dominant disease where one of your parent should have the same disease. But after doing a lot of reading, a genetic disease could be cause from a new mutation and this kind of new mutation in gene is frequently related to increasing age of father, thus you could be the only one in your family having it. I'm actually a medical student and I'm loving it. The whole thing about genetic medicine is quite complicated to explain and it do cause me some difficulty preparing and memorizing for the exam. :-)
Even though the fact I'm having SM made me really upset and inferior toward my circles of friend, but this difficulty of facing SM everyday made me think of the possibility of dermatology or genetic engineering as my future specialty.
I heard a saying from a prominent figure in medicine saying "half of what you learn in medical school is going to be irrelevant of outdated in 5 years after you graduate." and as medical student, it cause me some anxiousness on what will happen to me in future but also a great joy and gladness as I know medicine is developing at unbelievable rate. So I'm so sure there is going to be a cure for SM in near future. So cheers up guys! :-D
I'm 22 male who was diagnosed with SM somewhere around 2 years ago. At first I went to a normal GP and he misdiagnosed my SM as a normal eczema and prescribed me with a cream which didn't work after a week. Then I decided to go to a dermatologist. He was really good. When I say good, i meant it. He knew that I have SM just a second after looking at my chest. The moment I opened my shirt and showed him my bumps, he rudely and loudly said "OH I"m sorry I can't help you. There is no cure for this as this is genetic" ;-) He even took a syringe needle and poke my bumps without my consent to show my dad that there is yellow liquid inside the cyst which he said is only fat. Although it was painful, but it wasn't big deal for me then, as I had a more painful feeling inside for there is no cure for the disease.
What extra info he told me that I couldn't see anyone talking about is, i'm gonna have this SM until I'm 60 years old (by then I wont even care how many cyst I have as every bumps is going to be covered by wrinkles) and he said he could prescribe me a cream (which based on my experience and smell, it is a sulfur cream) to avoid new bumps from appear. I have some doubt about the cream he prescribed me as not only it caused me inflammation on certain bumps but even now i think i could see new cyst from popping out. But lets not jump into conclusion about the sulfur cream as the result might vary for different individual or it might be me who wasn't using the cream properly as I was studying in boarding school which prevent me on applying it routinely as it cause a really bad and strong smell. He gave me two option, 1) to do surgical excision which going to cause a hole in my dad's pocket. 2) live with it.
I'm the only one who had SM in my family which actually confused me as it should be autosomal dominant disease where one of your parent should have the same disease. But after doing a lot of reading, a genetic disease could be cause from a new mutation and this kind of new mutation in gene is frequently related to increasing age of father, thus you could be the only one in your family having it. I'm actually a medical student and I'm loving it. The whole thing about genetic medicine is quite complicated to explain and it do cause me some difficulty preparing and memorizing for the exam. :-)
Even though the fact I'm having SM made me really upset and inferior toward my circles of friend, but this difficulty of facing SM everyday made me think of the possibility of dermatology or genetic engineering as my future specialty.
I heard a saying from a prominent figure in medicine saying "half of what you learn in medical school is going to be irrelevant of outdated in 5 years after you graduate." and as medical student, it cause me some anxiousness on what will happen to me in future but also a great joy and gladness as I know medicine is developing at unbelievable rate. So I'm so sure there is going to be a cure for SM in near future. So cheers up guys! :-D
Hey guys,
I'm 22 male who was diagnosed with SM somewhere around 2 years ago. At first I went to a normal GP and he misdiagnosed my SM as a normal eczema and prescribed me with a cream which didn't work after a week. Then I decided to go to a dermatologist. He was really good. When I say good, i meant it. He knew that I have SM just a second after looking at my chest. The moment I opened my shirt and showed him my bumps, he rudely and loudly said "OH I"m sorry I can't help you. There is no cure for this as this is genetic" ;-) He even took a syringe needle and poke my bumps without my consent to show my dad that there is yellow liquid inside the cyst which he said is only fat. Although it was painful, but it wasn't big deal for me then, as I had a more painful feeling inside for there is no cure for the disease.
What extra info he told me that I couldn't see anyone talking about is, i'm gonna have this SM until I'm 60 years old (by then I wont even care how many cyst I have as every bumps is going to be covered by wrinkles) and he said he could prescribe me a cream (which based on my experience and smell, it is a sulfur cream) to avoid new bumps from appear. I have some doubt about the cream he prescribed me as not only it caused me inflammation on certain bumps but even now i think i could see new cyst from popping out. But lets not jump into conclusion about the sulfur cream as the result might vary for different individual or it might be me who wasn't using the cream properly as I was studying in boarding school which prevent me on applying it routinely as it cause a really bad and strong smell. He gave me two option, 1) to do surgical excision which going to cause a hole in my dad's pocket. 2) live with it.
I'm the only one who had SM in my family which actually confused me as it should be autosomal dominant disease where one of your parent should have the same disease. But after doing a lot of reading, a genetic disease could be cause from a new mutation and this kind of new mutation in gene is frequently related to increasing age of father, thus you could be the only one in your family having it. I'm actually a medical student and I'm loving it. The whole thing about genetic medicine is quite complicated to explain and it do cause me some difficulty preparing and memorizing for the exam. :-)
Even though the fact I'm having SM made me really upset and inferior toward my circles of friend, but this difficulty of facing SM everyday made me think of the possibility of dermatology or genetic engineering as my future specialty.
I heard a saying from a prominent figure in medicine saying "half of what you learn in medical school is going to be irrelevant of outdated in 5 years after you graduate." and as medical student, it cause me some anxiousness on what will happen to me in future but also a great joy and gladness as I know medicine is developing at unbelievable rate. So I'm so sure there is going to be a cure for SM in near future. So cheers up guys! :-D
sm_pls_go_away!
I'm 22 male who was diagnosed with SM somewhere around 2 years ago. At first I went to a normal GP and he misdiagnosed my SM as a normal eczema and prescribed me with a cream which didn't work after a week. Then I decided to go to a dermatologist. He was really good. When I say good, i meant it. He knew that I have SM just a second after looking at my chest. The moment I opened my shirt and showed him my bumps, he rudely and loudly said "OH I"m sorry I can't help you. There is no cure for this as this is genetic" ;-) He even took a syringe needle and poke my bumps without my consent to show my dad that there is yellow liquid inside the cyst which he said is only fat. Although it was painful, but it wasn't big deal for me then, as I had a more painful feeling inside for there is no cure for the disease.
What extra info he told me that I couldn't see anyone talking about is, i'm gonna have this SM until I'm 60 years old (by then I wont even care how many cyst I have as every bumps is going to be covered by wrinkles) and he said he could prescribe me a cream (which based on my experience and smell, it is a sulfur cream) to avoid new bumps from appear. I have some doubt about the cream he prescribed me as not only it caused me inflammation on certain bumps but even now i think i could see new cyst from popping out. But lets not jump into conclusion about the sulfur cream as the result might vary for different individual or it might be me who wasn't using the cream properly as I was studying in boarding school which prevent me on applying it routinely as it cause a really bad and strong smell. He gave me two option, 1) to do surgical excision which going to cause a hole in my dad's pocket. 2) live with it.
I'm the only one who had SM in my family which actually confused me as it should be autosomal dominant disease where one of your parent should have the same disease. But after doing a lot of reading, a genetic disease could be cause from a new mutation and this kind of new mutation in gene is frequently related to increasing age of father, thus you could be the only one in your family having it. I'm actually a medical student and I'm loving it. The whole thing about genetic medicine is quite complicated to explain and it do cause me some difficulty preparing and memorizing for the exam. :-)
Even though the fact I'm having SM made me really upset and inferior toward my circles of friend, but this difficulty of facing SM everyday made me think of the possibility of dermatology or genetic engineering as my future specialty.
I heard a saying from a prominent figure in medicine saying "half of what you learn in medical school is going to be irrelevant of outdated in 5 years after you graduate." and as medical student, it cause me some anxiousness on what will happen to me in future but also a great joy and gladness as I know medicine is developing at unbelievable rate. So I'm so sure there is going to be a cure for SM in near future. So cheers up guys! :-D
sm_pls_go_away!
o.O I haven't looked at this forum for a while and I am shocked to see so many new replies! I'm sorry to hear that you are suffering from the same things as I am, but at the same time it's kind of a relief that at least we're not alone in it.
First of all, to want_to_help: thank you so much for your kind and hopefull reply! I hope you are still checking this topic and you are willing to tell us something more about your diet, it sounds really interesting (and the fact that this means that I can do something myelf, is very appealing to me :-D ). Did you cutt out all kinds of meat or only the red ones? And do you consider cheese, chocolate and butter to be the same kind of evil as other dairy products ;-) ?
I myself have been studying the various options in laser treatment for a while, and I have had 2 small cysts removed with a CO2 laser. The good news is, that one of them is actually gone, and the scarring isn't too bad. The bad news is that I've developed a new, larger cyst, right beneath the two that were removed. Do any of you guys know if it could be the case that this new cyst is formed from the contains of the old ones or is this just a very unfortunate coincidence?
At Guest (the 22y male guest that is :-D ), your story sounds exactly as mine! I've been told all the same things (except for the cream part) and I've also discovered that my SM is probably just due to a very incovenient genetic mutation. Maybe we can pursuade you to go into SM research after your medical studies and find us a cure ;-) ?
At the other Guest, could you explain what you mean with the electric needle procedure? Is that the same as coagulation?
Finally, to sm_sucks, you anecdote made me smile; sometimes it's so easy to get caught up in your own problems and worries that we seem to forget that other people also have their insecurities. I'm really happy for you, cause it sounds to me like you have found someone who helps you to be at peace with 'your new self'. I wish you and your family all the best, and hope that your son will grow up without having to deal with SM.
First of all, to want_to_help: thank you so much for your kind and hopefull reply! I hope you are still checking this topic and you are willing to tell us something more about your diet, it sounds really interesting (and the fact that this means that I can do something myelf, is very appealing to me :-D ). Did you cutt out all kinds of meat or only the red ones? And do you consider cheese, chocolate and butter to be the same kind of evil as other dairy products ;-) ?
I myself have been studying the various options in laser treatment for a while, and I have had 2 small cysts removed with a CO2 laser. The good news is, that one of them is actually gone, and the scarring isn't too bad. The bad news is that I've developed a new, larger cyst, right beneath the two that were removed. Do any of you guys know if it could be the case that this new cyst is formed from the contains of the old ones or is this just a very unfortunate coincidence?
At Guest (the 22y male guest that is :-D ), your story sounds exactly as mine! I've been told all the same things (except for the cream part) and I've also discovered that my SM is probably just due to a very incovenient genetic mutation. Maybe we can pursuade you to go into SM research after your medical studies and find us a cure ;-) ?
At the other Guest, could you explain what you mean with the electric needle procedure? Is that the same as coagulation?
Finally, to sm_sucks, you anecdote made me smile; sometimes it's so easy to get caught up in your own problems and worries that we seem to forget that other people also have their insecurities. I'm really happy for you, cause it sounds to me like you have found someone who helps you to be at peace with 'your new self'. I wish you and your family all the best, and hope that your son will grow up without having to deal with SM.
Hi NL,
By the way I'm (the 22y male guest that is :-D )you can call me MF :-D (and of course without the smile, just MF) lol. Thanks for your encouragement. Actually I hope if it is not to complex, I want to do a thesis on steatocystoma multiplex. But before going to far, my 1st plan is to meet the head of dermatology of my university and ask his opinion on this SM. As I have not meet him before (I'm just in the 2nd year and Dermatology starts in 4th year), lets hope he is generous and would be very helpful like most of other professors I have met so far. And from there we will see what is the next plan. ;-)
By the way I'm (the 22y male guest that is :-D )you can call me MF :-D (and of course without the smile, just MF) lol. Thanks for your encouragement. Actually I hope if it is not to complex, I want to do a thesis on steatocystoma multiplex. But before going to far, my 1st plan is to meet the head of dermatology of my university and ask his opinion on this SM. As I have not meet him before (I'm just in the 2nd year and Dermatology starts in 4th year), lets hope he is generous and would be very helpful like most of other professors I have met so far. And from there we will see what is the next plan. ;-)
Hi NL, happy to see you have checked back. I spent a lot of time asking myself WHY is this happening to me? Is there a reason? With my frustration with doctors, I started investigating a lot of holistic therapies, as well as detox cleansing. I have done maybe 4 different types of detoxes - the lemonade diet, the liver cleanse (with olive oil) and several parasite cleanses. Does it help? Not entirely sure, but it hasn't hurt and each time I do my skin looks better and heals faster. My ayurvedic practitioner put me on a diet of no sugar, no processed foods, no meat, no dairy (including milk, butter, cheese) so I think this would include chocolate. She also had me take a bunch of teas bc she basically said I needed to create more "heat" in my body to "melt" the cysts. Again, I'm not exactly sure if this worked but I was doing it in tandem with the extractions. But from what I've studies re food and genetic disease...genetic diseases CAN be controlled. Our meat supply (I live in the US) is heavily injected with hormones - so I would recommend cutting out ALL meat and dairy, yes, ALL. I think fish is ok once in a while. And soy is highly controversial - it has high levels of estrogen, but I do still drink a little soy milk in my coffee every day. I would like to quit coffee too (I did on the ayurvedic cleanse) but it is too difficult to be without, so I have one cup a day. I encourage you to try it, for at least 2 weeks and see if it helps at all, by all means, it certainly will not hurt you, you will feel and look healthier. I am now studying to become certified as a holistic health counselor as a result of my frustrations with doctors - they never give you any advice for prevention, but I do have a deep seated belief that I can at least prevent new ones from occurring. I have seen maybe 3 or 4 new ones on my body since I changed my diet about 2 years ago. I do cheat once in a while, but I would prefer to maintain this diet - as a result of my research - I am confident that what you eat has a huge impact.
I get the bumps on my chest and shoulders. When I was 19, I was diagnosed with Polycystic Ovary Syndrome and I started taking the birth control pill to treat the symptoms of my PCOS. Within a short amount of time on the pill, all my bumps went away. Two years ago, I stopped taking the pill and all the bumps came back. The bumps will sometimes become inflamed and get a pimple like appearance, then turn into a keloid. I have a few now, and I'll use a warm compress over the area to calm the inflammation.
I've read a lot of information about this topic, but I still believe that hormones play a huge role. I'm just basing that on my PCOS related hormone imblances. And the fact that the birth control pill made the bumps completely disappear. Perhaps, high testosterone levels (which I have), contribute in some way to the formation of the cysts...and the estrogen and progestin from the birth control pills get rid of the cysts.
It's just a theory, but it seemed to help me. It's worth a try, especially if your already willing to take medications.
I've read a lot of information about this topic, but I still believe that hormones play a huge role. I'm just basing that on my PCOS related hormone imblances. And the fact that the birth control pill made the bumps completely disappear. Perhaps, high testosterone levels (which I have), contribute in some way to the formation of the cysts...and the estrogen and progestin from the birth control pills get rid of the cysts.
It's just a theory, but it seemed to help me. It's worth a try, especially if your already willing to take medications.
I have had this condition mainly starting around puberty in my scalp. Then it moved to the top of my ribs/chest/back/face.
Always thought it was acne.
I notced early on that soda would make them worse. I am 25 now and i think ive figured them out (for my body atleast)
Anyway, i was diagnosed with IBS when i was 11 that i just found out was crohns disease last month.
Do any of you get diarrhea a lot or have celiac/crohns/IBS?
One of the common theories on crohns is candida infection.
The way i was diagnosed with crohns was with a fungus Antibody blood test.
A lot of crohns patients have this antibody raised in their blood.
My theory is that these keratin plugs with vellus hairs inside that we get is caused by candida/other fugus overgrowth in our bodies.
Anytime i get diarrhea or stomach ache my keratin plugs proliferate like crazy.
My diarrhea/vellus hair cysts are definitely caused by diet/hormones.
Only gluten/yeast/sugar foods break me out and cause diarrhea. If i just eat brown rice and grilled chicken/lean ground beef all symptoms go away. Only table salt as a seasoning. Only water to drink as well.
I take hypoallergenic vitamins (nutricology) because i noticed even my older multi vitamin made the cysts come back. Probably trace amounts of yeast or gluten in them.
Reasons i think the cause is yeast overgrowth:
- yeast feeds on wheat/sugar/milk/etc which aggravates mine
- higher estrogen makes candida proliferate (ive seen girls here say they get them around their period, i took steroids in the past without an estrogen blocker and i had around 200 inflamed vellus hair cysts just on my chest, the worst it ever was)
im telling u guys tho 100% mine go away with proper diet, nothing else. And they dont fall out of the skin, somehow your body absorbs them.
Anyone can relate?
supplements
Always thought it was acne.
I notced early on that soda would make them worse. I am 25 now and i think ive figured them out (for my body atleast)
Anyway, i was diagnosed with IBS when i was 11 that i just found out was crohns disease last month.
Do any of you get diarrhea a lot or have celiac/crohns/IBS?
One of the common theories on crohns is candida infection.
The way i was diagnosed with crohns was with a fungus Antibody blood test.
A lot of crohns patients have this antibody raised in their blood.
My theory is that these keratin plugs with vellus hairs inside that we get is caused by candida/other fugus overgrowth in our bodies.
Anytime i get diarrhea or stomach ache my keratin plugs proliferate like crazy.
My diarrhea/vellus hair cysts are definitely caused by diet/hormones.
Only gluten/yeast/sugar foods break me out and cause diarrhea. If i just eat brown rice and grilled chicken/lean ground beef all symptoms go away. Only table salt as a seasoning. Only water to drink as well.
I take hypoallergenic vitamins (nutricology) because i noticed even my older multi vitamin made the cysts come back. Probably trace amounts of yeast or gluten in them.
Reasons i think the cause is yeast overgrowth:
- yeast feeds on wheat/sugar/milk/etc which aggravates mine
- higher estrogen makes candida proliferate (ive seen girls here say they get them around their period, i took steroids in the past without an estrogen blocker and i had around 200 inflamed vellus hair cysts just on my chest, the worst it ever was)
im telling u guys tho 100% mine go away with proper diet, nothing else. And they dont fall out of the skin, somehow your body absorbs them.
Anyone can relate?
supplements
I just registered, I'm "Gueessst" who posted above.
Here are some pictures of the keratin plugs that have been on the top of my rib for 13 years. They keep refilling with keratin when I don't follow the diet (it's insanely hard to follow)
Before popping:
http://img15.imageshack.us/img15/7453/46070364.jpg
After popping:
http://img19.imageshack.us/img19/8227/img0330tl.jpg
They aren't very bad on my ribs, before you say I have a mild case. The major problems are my scalp/face/back/chest.
These are where they popped up 2nd on my body. First on my scalp. The ones on my scalp though seem to be all over, the ones right here on my rib are ALWAYS right there or on the other side. They went to the right rib like 5 years after they were on the left rib.
They all literally start to go away when I eat what I said above/don't eat at all.
This is how I figured this out. My diarrhea would go away when I wouldn't eat. So I would not eat to be able to go hang out with friends, etc. I then realized that soda caused the keratin, which led me to find out I had Crohns.
I thought I had Celiac because gluten was causing them for sure, but I'm negative for Celiac and positive for Crohns.
Anyway, since no one is going to help us with this, I hope someone will be able to try a fast for a day or just eat brown rice/lean meat for a few days and see if any results are apparent.
Only try the diet if you aren't on NEEDED medications, because everytime I would test my diets out, I would stop taking all vitamins/supplements so there were no variables. (sometimes gluten is in pill binders, etc.)
The diet is basically an anti-candida/paleo diet, you can Google it.
Here are some pictures of the keratin plugs that have been on the top of my rib for 13 years. They keep refilling with keratin when I don't follow the diet (it's insanely hard to follow)
Before popping:
http://img15.imageshack.us/img15/7453/46070364.jpg
After popping:
http://img19.imageshack.us/img19/8227/img0330tl.jpg
They aren't very bad on my ribs, before you say I have a mild case. The major problems are my scalp/face/back/chest.
These are where they popped up 2nd on my body. First on my scalp. The ones on my scalp though seem to be all over, the ones right here on my rib are ALWAYS right there or on the other side. They went to the right rib like 5 years after they were on the left rib.
They all literally start to go away when I eat what I said above/don't eat at all.
This is how I figured this out. My diarrhea would go away when I wouldn't eat. So I would not eat to be able to go hang out with friends, etc. I then realized that soda caused the keratin, which led me to find out I had Crohns.
I thought I had Celiac because gluten was causing them for sure, but I'm negative for Celiac and positive for Crohns.
Anyway, since no one is going to help us with this, I hope someone will be able to try a fast for a day or just eat brown rice/lean meat for a few days and see if any results are apparent.
Only try the diet if you aren't on NEEDED medications, because everytime I would test my diets out, I would stop taking all vitamins/supplements so there were no variables. (sometimes gluten is in pill binders, etc.)
The diet is basically an anti-candida/paleo diet, you can Google it.
Messed up posting again, I'm the "Guest" that posted the last 2 posts.
If any of you want to get in contact with me, just PM me.
If any of you want to get in contact with me, just PM me.