Steatocystoma Multiplex cause, treatment and diet for prevention

hello everyone!

i was diagnosed with SM a couple of weeks ago and still in shock that i have this! yesterday, i had 10 removed, a cut, with a spoon look alike thingy she went in the cut and took it out. i am 35, have 4 kids. i had one of them when i was very little but remember at the age of about 10, it was itchy and it came off. and then the next one i only saw at the age of 20. my then derma said it is a cyst. and he cut out 3 or for of them with stiches. when i was pregnant, and this is very interesting, i got them on tummy - but only when pregnant with boys!!! i have one girl and i had nothing. they turn up overnight, and once they are here, they won't move. sometimes i can squeeze one out, but i have to be really lucky. any great news would be welcomed!!!
thanks!

I know a lot of useful infos, my family has a deal with this disease for decades. I want to find the practical solution, but I can't do this alone. It should be a hundreds of us seeking the solution and we should all be in contact!

Love you Emil.......

Hi Everyone

I hope everyone is still visiting this site as it has been a while since anyone posted. I just wanted to say that this week I went to see a genetics doctor and genetic counsellor. I was hoping with all my might that they could tell me there is a chance I am a complete one off and not passed this disease onto my two children. None of my family have it, not my parents, grandparents or brother. Unfortunately I was told that it is almost certainly one of two possibilities. Either I am the first one to start this gene alteration off (by the way it is caused by an alteration in the Keratin 17 gene) or one of my parents does have it but has just not developed it. They said my brother could have it but just not developed it. They won't do a test on myself or my children as they said this would have to be done in America and blood doesn't travel well that far and it is too expensive. Also they said what would it achieve? There would be nothing I could do. I've just got to keep a watch out. My eldest daughter is 9 and rapidly hurtling towards puberty and it fills me with dread every time I see her in the bath that one day I will see the first cyst. I feel so guilty. If anyone out there has experience of the family inherited situation or can give me any hope, please will you post a reply. Bye for now.

I first noticed cysts on my arms, chest, and trunk about 10 yrs ago. I was told they were sebeacous cysts and ony recently was told it was SM. I have spent LOTS of money having them removed, esp. on the trunk area. I can tell you I have tried EVERY thing known to man to curve the condition and treat the areas where I have had the cysts removed. After many years of research, i can tell you that you have to have the entire sac removed to keep them from reoccurring. if you don't they will come back again; esp. if there is any piece of the sac remaining. it will just fill up with that ugly fluid again. having them surgically removed will leave scar. i then had the scars treated with a cream called triluma. Cortizone injections will flatten a raised scar but be careful on the dosage. if the medication in the injection is too strong for you, it can depress the area too much and remove the pigment in your skin.
I would advise you to remove the biggest and ugliest ones first as the smaller ones do not look as bad then. I have seen over 20 different dermo. nationwide as well as plastic surgeons.
I have been living with this condition forever. I know how it effects you emotionally. It sucks but we have to make the best of it until they find a cure.

Hello everyone,
I think I remember some of you from another SM forum/website that was unexpectedly taken down some time ago. Anyway, I just wanted to say "hello again" and how nice it is to hear from others around the world who share this condition and understand on a day-to-day level what it is like to live with SM. Everyone has written something that deeply resonates with me and I thank all of you for sharing your experiences and feelings.

For those who feel isolated and lonely due to SM, I understand how you feel. I struggle with feeling hideous and repulsive on a daily basis. However, I can tell you that there are wonderful people in this world, those who truly do appreciate people for who they are, not for how they appear on the outside.

I think to some degree, I am my harshest critic-I imagine my cysts as being far more disfiguring and obvious than others (they are pretty large and numerous though, I estimate I have 200 or so ranging in size from <1mm to 5mm+).

Everybody has their own personal appearance issues that they struggle with, too skinny, too heavy, hair too curly, hair too fine, skin too dark, not being able to tan, big nose, freckles, etc. I say don't let SM send you down a lonely path for the rest of your life. Go out and live life to its fullest, get out of your comfort zone and meet other people. I know from personal experience that some people may all of sudden catch sight of a cyst on my face or neck and subconciously and repeatedly focus on it during a conversation, but I try to let it pass (even though it is always painful and fills me with shame, but we all do it, haven't you stared and someone's mole, pimple, lone hair) because what else can you do? Live life behind a curtain? Lock yourself away from the rest of the world because people might look at your bumps? I am a shy person to begin with, having bumps all over my face, neck, chest, arms, back and thighs does not make it any easier, but given the choice of living with SM or dying alone with SM, I chose the former. I dated for several years and everyone I dated accepted me and my bumps. All of them were physically beautiful, intelligent, and kind-hearted people. One even commented that she liked my bumps because it made me unique, no one else had anything like it. So please go out and enjoy life. You are a package of many wonderful attributes and the SM is just one tiny portion of who you are and it doesn't change what kind of person you are or dictate how you should live your life. All I can say is that you deserve a happy, full life. You only get one life, make the most of it. It will take courage, a spirit that can take a few lumps, but it will be worth it.

I still am shy about being touched, esp. casual touches like someone running their hand along my forearm (or even giving blood or a visit to the dentist, with the bright exam light shining on my face and neck, showing every bump and cluster) and a little apprehensive about meeting new people face to face, esp. in a brightly lit room or outside on a sunny day, because I know the bumps will eventually catch that person's eye, but everyone has daily personal struggles and I don't want SM to control my life. I am now happily married to a wonderful person who loves me for me, the SM is not even a big deal to her, it's a much bigger issue for me.

I was diagnosed with SM as a teenager (I live in California, USA) and am now almost 34 years old, with a 1 year old child. I read the journal articles and saw that this is likely an autosomal dominant trait, so it is likely that my child has a 75-100% chance of inheriting SM. Passing on SM to a child made me really struggle with the idea of having children, but I talked about it with my partner and we the possibility of passing on SM was not a deal-breaker. Sure, SM can wear on you mentally, but it doesn't affect your physical health and it can only affect you mentally if you allow it to. Our child is physically beautiful and has a charming personality. Other people remark that he is the happiest, more affectionate child they have ever seen. We hope that he will do lots of good in the world, and even though a small part of me worries that the tell-tale bumps will emerge as he gets older, I hope that he will share the same feeling I had towards my father (who has bumps, was never diagnosed, and doesn't know if anyone else in his family has it), that even though dealing with SM can be a struggle, life is too good and filled with too many opportunities. It would have been a shame to miss out on all of this just because my parents didn't want to have a child go through the psychological trauma that a person with SM might endure. Andreaed, I sympathize with you, and I think your children should realize that life is a wonderful gift, and should SM be in the future, you and your family are proof that life is good and worth living.

I hate to rain on the parade, but personally, I don't think there will ever be a cure for SM. Fetuses would need to be screened genetically and we would need genetic engineering to possibly repair the defective gene. This is far too ambitious of a goal for a very rare skin condition that doesn't cause physical injury or shorten your lifespan. There are far too many other diseases that would be higher up on the priority list, so there would be little funding for a cure for SM, therefore, little research interest, in developing a cure. However, anything is possible, and I'd be very happy to be proven wrong and read in the paper tomorrow morning that there was a new discovery leading to a fool-proof cure for SM, but until then, I'm not holding my breath and locking myself indoors from the rest of society.

I wish there was a cure in case my son develops this condition, but I'm going to spend my time and energy helping him live a full, rich life rather than hoping for a cure that might never come in our lifetime. No remedy is 100% benefit and 0% risk/detriment. Even living with SM follows that rule, but you only get one chance, and life is too short.

I truly appreciate this forum. Sharing and connecting with others with SM helps me get through the rough patches. There are times when I wish I could carve out every single bump, squeeze each cyst until it bursts, pack salt into every wound just out of spite/hatred for all the mental anguish the cysts have caused, but then I try to get myself out of that funk, because it's not going to be very productive to stay there. That's why I'm glad you're out there. Please keep in touch.

P

I too suffer from SM, and have since I was 12 years old. This condition has been such an awful thing to deal with, personally, because I am the only person in my family with it. For instance, my older brother has flawless skin, as do my parents. It's always been so sad to me, that someone can be singled out to carry this disease through life - alone. Thankfully, I'm very blessed to be married to a wonderful man who loves me beyond my bumps, even if I'm self conscious about them. Life just isn't fair sometimes... God gave me beautiful skin, and this horrible skin condition that lies deep beneath the surface. I'm now 26 years old, and I think ALL THE TIME about what this will look like when I have children. *if I have children, that is* Will they have it even worse than I do?? I only have one on my face, and one on my neck (so far), mine are localized mostly to my chest, arms, and back (right above my bum). I probably have a couple of hundred, all in all. For the most part, these are areas that can be easily covered up... but what if I pass this on to a child, and they have it to an extent that I can't forgive myself for willingly passing it on? I guess I just shouldn't think about it so much. If it happens, it happens. :-(

Life can be very cruel sometimes... On almost a daily basis, I'm complimented on how "perfect" or 'beautiful" my skin is, because all they can see is my face. It's so unfair that I get to internalize this suffering, as this condition gets worse and worse every year. I've got scars all over my abdomen because the obsession with getting the cyst out has gotten the best of me over time, and the scars are on my wrists as well. Now I'm too the point where I have to just STOP myself from mutilating my skin with picking that will never get rid of these cysts. ***sigh*** I truly hate this. But it does feel good to know that I'm not alone... and that there's a forum like this to hear other people's stories.

I'm currently going to school to complete a degree in Fitness, Health and Nutrition, but my ultimate goal is to become a Physician's Assistant to a Dermatologist (imagine that!). It's my goal in life to use this affliction for good. There are so many people out there hiding who they are... pretending that they have it ALL together, but everyone suffers from their own issues. Whether your GORGEOUS on the outside, but absurdly self-conscious, or ugly with a heart of gold... we all have something to offer as human beings, and you can't live your life hiding from who you are. Yeah, I have this condition, and it ITCHES constantly, it makes me feel ugly in a bathing suit, and sometimes I wear long sleeves too often (lol)... but hey - I choose to love myself for who I am.

Maybe someday I'll be able to connect on a different level with my patients because I have this condition. I'll be able to tell them, and mean it, that I've BEEN there... and AM there. I've got something that is theoretically untreatable, but I still get out there everyday to help other's conquer their skin problems. I don't know if it will work, but somehow I hope it will make me feel more comfortable in my own skin. Not to mention... I hope to get some CHEAP laser treatments out of it, and hopefully some great techniques to drain these larger cysts.

Keep in touch...

V

Since young, i have always noticed some "bumps" on my underarm skin anad knees that upon pressing and squeezing will produce pus/ oil fluid . It wasnt until 3 years ago. when i was 17 then i finally went to consult a skin doctor at the national skin care centre. and yes, it's diagnoised as SM.

Initially it was quite a blow to me especially when the doctor , a Associate Professor in Skin care, told me that there is nothing to be done. No medicine to take, no cream to apply, no diet to watch. It really sounded like some incurable disease then. It gets worse when the doctor told me that there's a chance that my kids might get it from me. The only consolation then was that i was told that these cyst will appear any where but the face. But i was quite puzzled when i saw some posts on the forum that some of the SM sufferers actually have it on their cheek. The closest i have is on my neck, which is the most obvious since that's where the muscles and fats under the skin are the least hence making it look more prominent.

I understand that SM will not post any health hazard apart from the possibility of passing down to the next generation. But it is a mental turmoil for me since i'm the only one in my family who has it. Sometimes i wonder why on earth must it be me. Being appearence conscious, sometimes my friends will ask my what is that on my fore arm. Those are usually scars from pressing it out myself using needles and some basic antisceptic cream, resulting in unsighly scars and painful inflamation. It seems more like a cycle, a habit that i HAVE TO get rid of these sickening oil bumps under my skin. It SHOULDNT be there. It's very hard to explain to friends who ask about my body skin problem, mainly the arms, calfs and chest , when my facial skin is quite perfect. No pimples no enlarge pores. All i can tell them is that it is a body acne, thank goodness it's not on my face. followed by a smile. But actually i'm sinking another level down knowing that they have been more obvious.

I just came back from another visit to a "famous" skin doctor in my country (Singapore) and same as the 1st time to the visit to the skin centre, i broke down and cried uncontrollably when the doctor said there's nothing that can be done. HE didnt even charge me a single cent. Making me feel more helpless and "incurable". As a girl, this is too much for me. There's nothing i can do to improve it, that makes it more depressing. The only consolation is the hope that it will not spread, as the doctor said that it'll "stop" spreading as i get older as the oil glands under the skin starts becomes less active. Having this makes me feel imperfect and ugly. And it dashed my dream of being a model.

The only thing i can do nw to help myself i guess is to stop using needle to extract them out by myself. And find some ways to improve on the scaring caused. IT's very obvious since i'm very fair . Any recommendation on some creams to use? i've tried Retin A , it works bu thinning the layer of the skin hence promoting skin renewal and stuff. but applying too much will make the cyst more prominent and itchy/ irritating since it'll be nearer to the surface of the skin. but it's a good cream to use if you are decided to DIY extract some out yourself, it'ld be easier to take them out after come application of the cream. But remember to use a clean needle and anticeptic cream after that to prevent inflammation.

This forum has been a tremendous help to me. At least i know i'm not alone in this world with this rare skin problem. May mircacle happen one day, at least find a solution to prevent passing down to the next generation. I cant imagine my children suffering the same emotional destress as me.

Hi all,

I have SM too but i would like to ask,

Does SM have any linkage to other problems like tumor or cancer? or will it worsen / increase the chance of getting them?

The reason I ask this is because since our Keraton 17gene can mutate into something like this, I am afraid that other genes will also mutate to something similar or worse.

Please Advice. Thank you.

Guy from SinGapore.

@SMulitplex
It does spread or go away by time. It depends of the person and how their physical condition are.

I have them in my genitalia and it is really embarrassing. For some reason they keep increasing and never gone away for me. I guess i will have to force myself to take better care of my body since i have been neglecting it recently.

It is really scary that some day it might turn out like this.
NOTE: these are pictures of genitalia with Steatocystoma Multiplex
http://www.skinatlas.com/steatocystoma1.htm
http://www.pathguy.com/lectures/steat_mult_1.jpg

I already have two big visible bumps and the rest are kinda hidden under the skin --unless i stretch the skin, they are barely visible. I tried to prick them out and they got worse and that is why they became 2 larger bumps. So i think it is best not to forcefully take them out. (although in some sites they do say that is the surgery method which works on some people and not on others.) It is not worth the risk in case you get to read somewhere that it might work, just DON'T.

I read somewhere that it might be linked with hairs. I read that hairy people tend to have this disease. I wonder if it is true (i am a hairy person myself).

Also, i read a lot that because they are not live threatening, doctors don't care much about the cure about it. For them, it is more like an cosmetic issue. And yea for those who think whether this have to do with cancerous cells, it actually does. Cancer have to do with anything that is abnormal growing and multiplication of cells. In our case we get abnormal growing of these bumps under our skins.

maybe we should create a myspace support group!

i am so glad i found this discussion. i was diagonosed this month once went to a different dermatologist for a second opinion. they never want to cut the ones out on my chest between my breasts. why are they worried about scars but i am not? there' too many i know. i have them on my foreaerms, on my tailbone/top of butt crack which i may get surgically removed, a few on my neck, bikini line, and i did have one on my stomach but the doctors finally got it(never came back). it's been humilating the dermatologist had to pop one on my butt twice within the last four years.

I am making a myspace group for us all.

i was recently diagnosed. for the past 3 years some of my cysts get inflammed and i noticed the pattern is once a month. It is hormonal. I am taking evening primrose oil to stop inflammation.

You may want to try tea tree oil and read up on herbal medicine!

take a hot shower first to open up the pores and then use tea tree oil over the cysts. i used the anti bacterial tea tree oil soap and ntoiced the puss started to come out but this could take months but it is effective!

I am so adamant about finding a cure!

i have many on my chest, a few on my tailbone, forearms, neck, and one was successfully removed lower abdomen..basically the nurse at the dermatolgist squeezed it out with an instrument.

I have a had a similar condition that is supposedly linked to SM, called Vellus Hair Cysts. They started appearing when I hit puberty and then the only time that I get new ones is when I consume milk, ice cream, or milk chocolate. Strange, I know, but I think it has something to do with the hormones in the milk or perhaps the body not being able to process the type of fat that is in the products. I have had them removed by my dermatologist and I have just recently learned how to remove them on my own, which was a big relief. I'd say that I had about 100 of the cysts total on my body. They were mostly located on my abdomen and my rear end. Now I probably have about ten left. The key is to get the technique for removing them from your skin. And then treat the pigmentation problem that subsequently results from the excision. I personally use the lancets that diabetics use (it's a thin needle without a syringe, available at any drugstore). You do not want to stick the lancet into the center of the cyst, you want to pierce it from the side and lift up. I guess it's kind of hard to describe exactly how it works. What has worked for getting rid of the discoloration of the skin is something called a Jessner Peel. A doctor does not have to perform a jessner peel. An estetichian can do the peel. Just make sure that you get the peel done by someone that has experience with you specific skin type, so that you don't end up with blotchiness. After I had the peel, it was like I never had the condition.
So to sum things up, avoid any foods that you know trigger the cysts to appear (this may be different for everyone), have the cysts excised, and get rid of the uneven skin tone with skin peels. I hope this helps!

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Hi guys,

i'm a 18 year old boy who lives in Belgium. I had SM since like 13, but it never really bothered me at that time. My mother and uncle have SM too. So i got it from my momma (lol) I have some cysts on and below my neck,some between my pecs, on my armpits, under my lower abs and upper legs and 2 on my scrotum (i had three but i could squeezy one out without havin much pain, i was so happy that day, 2 more to go..lol) A lot of them aren't really noticable but i can feel them under my skin. I don't have sooo many cysts. The cysts on my neck are the ones i'd like to have removed first because those are the ones u can see.

Like a year or two ago, a lot of cysts always got inflammed, like twice a month. That was usually under my armpits and could be very painful. I had to go to the derma very often so she could squeezy that dirt out of the inflammed cysts. In January i took antibiotics for like three months. I don't take them anymore and rarely got inflammed cysts after that. ALSO the cysts that I got removed (the inflammed ones, i never got other cysts removed YET) never came back for the most part.

One of my hobbies is bodybuilding/workin out. I think it may help stop more cysts from devlopping but i don't know.. Because of my sport i eat a lot and healthy.
I read about lasers so i'll ask a doctor for more info, because i want to get rid of those cysts!

WE NEED TO UNITE AND LET THE WORLD HEAR ABOUT THIS SKIN DISORDER OTHERWISE NOBODY WILL DO RESEARCH TO FIND A CURE.

Let's try to do everything we can to find a solution!! I don't really know where to start, i'm young. Maybe sending 100's of e-mails explaining what SM is etc.

I know it can be hard sometimes and very frustrating, but we need to do all we can to find a cure. Just enjoy life, most of the people around us don't even have a problem with this, the biggest part of the problem is in our head. Keep talkin about this disorder (it's NOT a disease!!!) and we need to keep in touch with eachother. Hopefully some more people who got SM find this forum. Have a nice summer;)

Mike

Hi!

I'm 30 years old from the Philippines. Like most of you here I've been searching the internet how to get rid of my SM. I noticed the bumps when I was around 15 but was diagnosed by my dermatologist when I was in my early 20s. The Dr. gave me isotretinoin but it didn't work out. She aspirated some but it came back after few months. She later told me to live with it for the rest of my life. :-(