Steatocystoma Multiplex - Cause, Treatment and Diet for Prevention

hi, thanks for your advice keep it coming this will help us a lot peoples like me, i have SM al over my body there ain't a place without sm, i am really frighten what will i do in another few years this will kill me please let all of us make a campaign against this evil SM lets seek help from the government.

bios wrote:

bios wrote:

I was also diagnosed with SM two weeks ago...reading those post, what I can do only is to exercise and do a better diet.
I cannot afford a surgery...and besides, most of the successful surgery were in U.S...
Too sad.I hope there's an easy,affordable way to at least prevent it from spreading...It's already 2011..any new studies about it?

Yes, I'm wondering the same thing too. It's 2011, there should be a treatment for this disease available already. T_T

However, because of the lack of the awareness of this disease, I doubt many people are looking for a way to cure this disease.
This disease is rare, yes, but so are many other diseases that get more attentions than SM.
The thing is we need to create public awareness to gain people's attention. And we don't even have a SM support group, unlike other rare diseases. I think one person did try to come up with the SM support group website, but in the end it didn't really materialize and it's gone after it's less than a month old.

Partly, I blame the mod (to the mod, please don't ban me). The mod keeps blocking any links to other websites/email addresses. I can understand why, but I think the mod should allow link/email posting; the benefits just outweighs the bad risks. For example, the mod even block the posting of Pachyonia Congenita support group website, a non-commercial website. What if a person with PC is trying to look for more info & support about his/her condition, but he/she cannot find it because the mod blocks that website? (Many doctors & geneticists think there's a link between PC & SM, as many people with PC also have SM.)

And while I do appreciate steadyhealth for giving people a place to discuss their health concerns, steadyhealth is just not dedicated to a certain disease. For example, is there a section dedicated to SM? pictures of SM? causes of SM? treatment options of SM? And I think in the present, steadyhealth is the website people with SM frequent most -- what if somebody comes up with a SM support group website again and before the website can even take of, it dies because it doesn't get enough attention to sustain its operation? Again, I think if steadyhealth really care about people who're suffering from diseases, they should allow people to post certain links/email addresses.

It's sad, most people don't even know that this disease exists. Some people even think that SM is contagious/infectious when it's genetic. And to those who know they're just thinking it's non-life threatening but it can really consume you alive.

i agree with what you said (people thinks its non life threatening but it can really consume you alive) i think people like me we should make public aware of this evil diseases we should make slogans or campaign.. please support us even we want to live like others please please come forward its not too late..
keep it coming. thanks

thanks smnot4life keep your thought coming,

thanks smnot4life, keep this msgs coming. i have evil SM since childhood i was never bothered about it now this is getting really iterating, now i am 20yrs i am married living with family. some day i feel really frustrated and depress about it because i can't go out like others i can't wear cloths that i feel comfortable with or makes me feel better, i have been going to the doctors since last 3yrs they were researching about it they found out what it is recently the last time i went to doctors was 11.08.2011 and the doctors said they can't do nothing about it, when the doctors said that they can't do nothing about it you don't know how i felt, then what's the point being a doctor if you can't treat us why there is so many scientist dermatologist etc is that why we pay the government we pay taxes.. Any ways I have sm all over my body specially on my chest and back, day by day this sh*t is increasing i have thousand of this its uncountable i also have some on my privet areas, if sm never stop growing then people like me what will do? let all of us make a slogan make a campaign or website to support with sm? lets make the public aware of this disease so we can get attention and support..please come forward help us.

hi andreaed, i just finished reading this that was pretty helpful next time i go to see my GP i will tell about this, i live in north west of England in Manchester, i would appreciate if i can get your detail so we can talk about this as we both live in the same country and pretty close, if you think its not right then leave it i can understand, i have SM since childhood i am 20yrs now the doctors can't give me any help they have discharge me from hospital, i have thousands of sm i can't count them it has spread all over my body i want help please keep us update,

keep fighting for this don't give up.



thanks everyone

Hi all,

I'm new to this forum and actually I think this is my first internet post ever! I was diagnosted with SM last month by a dermatologist after years of being told by internists and dermatologists that I just had fatty cysts/lypomas and there was nothing to be done about it. Finally, my fiance who is a physician recommended that I see a plastic surgeon about removal because they bothered me so much. Background first: I'm a 37 year old female, my parents are from Taiwan. I first noticed the bumps when I was maybe 20 but there were very few and could only be felt. In the last few years, I've lost about 10 pounds and am now pretty thin but previously was just normal. The weight loss coupled with the growth resulted in loads of little bumps that became very noticeable on my chest, underarms, and tummy. The plastic surgeon was amazed when he saw it and instantly diagnosed it as SM, saying it would have been a difficult diagnosis for most physicians to make because the disease is so rare. He said that it appears that the disease originated with Mongolians (?!) and that the condition has been most commonly found in those of Turkish or Korean descent although I'm of neither. His suggestion was excision using an 18 guage needle under anesthesia with the caveat that the bumps would refill slowly over time so I would have to have the procedure repeated every 3-5 years or so. Two positive though! The growth should slow as we age because our bodies produce less oil, AND, we're likely aging better than the average person since our bodies are overproducing oils.

 

Now to the good news and the only reason I wanted to take the time to post this message. I have been feeling very hopeless and sad about the situation. I live in LA so its hot here but I would dress to hide the bumps because they'd gotten so bad. But my lovely lovely fiance has solved my problem. Over the past few weeks he has removed over 100 of the cysts using lidocaine (spelling?!) to numb the area and then an 18 guage needle. At first he tried to excise them but found that since a lot of the cysts are old, the fat has solidified and wouldn't come out. The easiest and actually most rewarding technique has been to numb the area (the medicine does burn a bit going in!) and then use the 18 guage needle to make the incision then actually squeeze out the fluid. Sometimes it comes out in a yellowish oily puddle, sometimes it comes out more solidified. Its gross but a little bit fun in a nasty way :) So please, don't lose hope and find someone who can help you with this process. My chest is almost entirely smooth at this point and I had a few on my neck, arms, and shoulder that are now gone. There has been no scarring, other than immediately after, you'll of course have a tiny scab and maybe bruising if you were overzealous with the squeezing.

 

Best of luck to all of you...

I have just recently found out I had SM. It's somewhat reassuring to read all these posts and know I'm not the only one dealing with this sh*t. I have had a lot of questions answered in the past couple of days except for one. Maybe one of you can help me with this. Last month, I was going to get my chest tattooed and since I've found really no actual treatment or cure for this disease, the only other option I have come to is to cover them up with tattoo work. They are so aesthetically displeasing and some days, just looking at them can bum me out and ruin my day. Anyway, what I'm wondering is, would it be detrimental to tattoo over the cysts? At this point, I don't really care as they are benign and I don't want to spend large sums of cash to have the excised when it's pretty probable they will just re-emerge. I can't imagine it would be a problem seeing how tattoo ink is on the outer layer of the skin and the cysts are underneath, attached to tissue. I just can't stand looking at them and I'd rather have art I appreciate then dozens upon dozens of keloids or unsightly scars. If anyone has any insight into this particular situation, it would be much appreciated. Again, really glad I found out what this is and that there are many others dealing with the same nuisance.

Did you ever find someone in San Francisco to help you? I'm also trying to find a good dermatologist that can treat SM.

Hello. Did you ever find someone in San Francisco area to help you? I'm also looking for a skilled dermatologist.

bshd13 wrote:

smnot4life wrote:

i was diagnosed with SM when I was 23 (but had it for years before that) & like most people here was told it was something that I would have to live with, somi have which has basically meant never taking my shirt off in public. But at the time I was just thankful it was not cancerous. It has been 15 years since the diagnosis and I decided to look online to see if there was a cure or at least a forum for people with SM. I can tell you I have tried accutane for acne and it did seem to help a little with the SM but after I quit taking it they started right back up. I have tried different diets and because of my adult acne I don't drink milk, eat chocolate, peanuts and other things that seem to trigger breakouts. I have squeezed or poked with a needle countless cysts which 9 out of 10 times come back. I have recently taken doxycycline and monocycline and tried numerous topical solutions for my acne but have always hoped they might help the SM. I also recently started drinking only water and also just lost 25 pounds and I was not really that overweight to begin with. One thing that might seem strange (maybe not to anyone here with SM willing to try anything) but I started applying roll on deodorant (dont ask me why) to a cyst that had been on my forearm for a decade. I cannot tell you the number of times I squeezed this thing to try to get it to pop with no luck. Well after a couple weeks of applying the deodorant one day I squeezed and it exploded. So then I started applying the deodorant to my chest/stomach and I don't know if it's my imagination or maybe all the other things I mentioned I am trying but they seem to have gotten slightly better. I mean they are all still there but they seem to be less noticeable and new ones appearing less frequently. I by no means want to give anyone false hope but it's obvious to me that if there is ever going to be a cure it is going to be discovered by someone that has SM and more than likely stumbled upon. This is why I started searching online today. And I must say I was kind of surprised/disappointed there was no forum or message board dedicated to SM. But I really have no clue how rare SM is. Although I am the only person I know that has it and that includes my own family. But if there is interest maybe here in the near future I will create a site and find out.

thanks smnot4life keep your thought coming,

smnot4life we have almost the SAME story. I'm 23 as well and everything you mentioned is something I've dealt with, but I am actually interested in trying the deodorant method. I was on the same medications and certain foods broke me out as a teenager. let me know if you have any other info regarding treatment for SM.  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

To the moderator: don't you think it's a bit harsh of you to keep editing posts all the time? You're benefiting from us with unfortunate (presently) uncurable disease. Some of us are genuine concern to get in touch with other people with the exact same disease, so we can help each other out.

Yet, you keep preventing us from getting in touch with one another. You are already benefiting from us sick people; at the very least, you can try not to keep us from feeling alone and isolated by preventing us from connecting with one another. Have a heart! Don't be evil!

Hey all im 19 and also suffer from this dogsh@# disease, i understand that removal of cysts seems to be the only treatment but does anyone know if there is even research into a cure being performed

hi, im caesar 21 yrs old from phlippines. i'm hving this sm for over 4 years. i went to dermatologist but as in ur case, they told me the same. can anyone give me some proper advice on how to cure this thing? thanks a lot. please kindly pm me.

want_to_help,

Thanks so much for sharing so much information. I too am in NYC and would like to get information on the aesthetician that you use. I've gone to several dermotologists in the city and have always been told that nothing can be done. Please let me know how I can contact you.

Thanks again!

My name is Ebony, I was recently diagnosed with SM a few months ago. For years I went to numerous Dermatologist and no one had a clue as to what was causing the large lesions all over my chest, back and arms. I am living with the embarrassment of not being able to wear tank tops or clothing that exposing my skin. My doctor have recently prescribed lotion/antibiotics to minimize the lesions...which I have yet to see any difference with the medication. Can anyone give me any tips or advice as to what to do, or share how you are coping with this ugly disease? My facebook info is Ebony Joi...you can also look me up there. Thanks!!!!