Steatocystoma Multiplex cause, treatment and diet for preven

janawade · Newbie Joined: 21 Jun 2007 Posts: 1

I went to the dermatologist last week because I have hundreds of them on my cheeks. After a biopsy, it confirmed SM. Provided insurance covers it, she is going to try to use a fraxel laser to see if that helps. I'll keep you posted...keep your fingers crossed. I couldn't find any articles online where fraxel was used on SM.

chinajumbo1978 · Newbie Joined: 25 Jun 2007 Posts: 4

Hi Guys, all info provided here are very useful. I was diagnosed with the condition about 5 years ago. No changes to the condition so far. Very depressed, as cosmetically it is very unpleasant.

I am trying Chinese Herbal Medicine right now to reduce fat content in blood stream and Cholestrol level. Will let you guys know if it works and provide the formula in due course.

Many thanks!

P.S. I do agree with one buddy above the thought of form a SM club, so we can all come together have a good mourn and share info!!

Get in touch if interest on ****

**edited by moderator**emails not allowed**

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chinajumbo1978 · Newbie Joined: 25 Jun 2007 Posts: 4

Hi everyone, thought all you guys have made some useful suggestions, I shall try out.

I was diagnosed with Steatocystoma Multiplex (gahhhh, hard to spell, will only refer it as SM.... Sad

) 5 years ago. No real changes to the condition over the years. As you have all experienced, it suprises me sometimes that we are living in 21st century, yet there is no cure out there for little fatty lumps!) , anyhow the short of it is I don't want to have scar all over me. Have been trying some Chinese herb medicine to reduce fat in the blood stream and lower cholestrol, only started a month ago so no obvious improvements as yet. If it works, will let you guys know the formula..

In the meantime, just thought its a good idea to have a SM club or something so people have the same rare condition can come together, have a good mourn and discuss any potential treatments, you just never know...!

Anyone interested please email **edited by moderator ** e-mails not allowed **
I am London UK based..but quite happy to hear from fellow patients from all over the world!

A bit depressed
(coz I can't f**king wear bikini ever!!!)
Jumbo

MedSeeker · Newbie Joined: 05 Jul 2007 Posts: 7

well guys, from what I have researched (and I really have tried to look into this matter), the only plausible solution I believe in is the vein hook removal method. I agree that it may be a bit intimidating, but I believe that if the surgeons at the "Department of Dermatology, Kyung Pook National University Hospital, Daegu, Korea" were able to help 5 patients with this condition and prove that no recurrence occurred, then it should be the method that we wish to proceed with. I am residing in Toronto, Ontario, and I know from one post above that at least one of us is in the UK. BUt i believe that we should somehow encourage this treatment to be researched further around the world so that we can cure this disease a.s.a.p.

I know for one that I am willing to go to great lengths to solve this matter (to financially I am not sure as to what each of us can put to getting rid of these lumps - I myself do not have a lot of excess money). Let's all try to find out if this vein hook research has spread to other dermatology circles in different regions, and see if doctors are willing to learn to treat this condition.

Good luck everyone, let's not give up.

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

HI everyone. I've just come across this website. I used to write on a forum called HealthForums.co.uk and was in touch with someone called Wingster from New York but it looks like the forum has closed down. I notice Wingsta has posted a message here in April and wonder if it the same person? I've had SM since about 14 years old and only diagnosed when I was around age 30. I have polycystic ovaries and hormonal inbalance and always thought it was someone to do with this. Very shocked when I realised how rare it is. I am now 36. Cysts are increasing all the time but I currently am treated by CO2 laser once a year or so. This is quite successful and leaves no scars after a few months. I live in England and currently this treatment is free of charge but my dermatologist is starting to suggest it is too expensive to keep doing this every year when there is no end resolution to the problem. I am taking 20mg Roaccutane to try to stop new ones coming. Not sure if it is working as yet. Wingsta and I have been looking into a new laser that is being developed in America at Masechusetts Hospital by Rox Anderson called Selective Photothermolosis. This has been tested on pig skin and it melts away fat under the skin which is then re-absorbed back into the body without damaging the outer layer of skin. I am struggling to find out much more. I have e;mailed Rox Anderson twice to make him aware of S.M. for when he starts human trials. I would even be prepared to travel to America for testing but he has not replied. I may write to him instead. It is good to come across others like myself. Will keep in touch.

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

Hi Everyone. More information has come to me since I last posted. I can't believe it but this morning I have actually received an e:Mail from Rox Anderson in America at the Wellman Center for Photomedicine in Boston. I explained to him the condition of SM and whether his new laser could be of help to me or one of you already in America. Some of his reply is as follows:- 'Steatocystoma is uncommon but I have treated several cases well with (1) a mid-infrared laser technique and also (2) photodynamic therapy with aminolevulinic acid (a cream activated several hours later by intense red light). The latter is probably available in Regensburg Germany if we are too far away (Dr. Rolf Szeimies). I would be happy to see you in Boston, but you would have to cross "the big pond"
3 times, at least a month apart. I am willing to treat you on a compassionate basis (cost would be only a few hundred dollars for the aminolevulinic acid. Some people able to, will donate something to an educational fund here at the Wellman Center for Photomedicine but that is entirely optional). If interested please contact bdammin@partners.org after August 1.'

How exciting. Unfortunately I am not going to be able to travel to America 3 times but am going to research further on the techniques he has mentioned and possibly look into the German possibility. Hope this gives us all some hope.

wingsta · Newbie Joined: 06 May 2007 Posts: 3

Hi andreaed. Nice to hear from you again. Yep wingster and wingsta are both me. Was a little shocked when the other forum disapeared. Last I heard from you I remembered that you were contacting the doctor about the laser treatment to see if it was possible to be used for SM. Glad that there are doctors that cared enough to respond back.

Those those that live in the U.S. that have read my previous post about Juvista, a company named Shire have bought the worldwide licence for the drug outside of Europe and have announced the possible release date as 2011 if all trails go well. It is not 2009 or 2010 as originaly thought by some web sites. Guess the wait is going to be longer than originaly thought of.

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

Hi Wingsta. Good to be back in touch again. I stumbled across this website by chance. Glad I found it. I've looked into Juvista and agree it looks promising but feel I must be lucky in that the surgery I get with the CO2 laser is virtually identical to the vein hook surgery anyway and I heal without any scars whatsoever. I told my surgeon about vein hook and he said 'well that is the same as what I do' which in effect it is. I just wish I could have the time off work and the finances available to travel to America 3 times to see Rox Anderson but I've also got two small children and it is impossible. Every time I try to discuss the selective photothermoylosis with my surgeon he justs keeps saying it already exists as the Smoothbeam laser but I know he is wrong but he won't listen. He is quite stubborn. I think there is only me and maybe one other person he treats with this condition and it is the leading dermatology centre around the north of England. He is convinced the Roaccutane is going to stop new ones coming but I think the best it can do is maybe delay the progress. It doesn't seem to stop existing ones getting bigger. I had some more removed 2 weeks ago and he took loads of photos of me to take to his conferences with him. How flattering! God it was degrading. I ended up in tears but he was bemused as to why I was upset! He is quite old and has spent his whole life looking at freaky skin so probably takes it for granted and has lost touch with how each individual is feeling. Probably a bit emotional too as I am going on holiday to Spain in 2 weeks and the thought of putting on the swimwear makes me nervous although people say they can't see a thing. Keep in touch. We must all research together as much as we can. Bye for now.

jennyramone · Newbie Joined: 05 Aug 2007 Posts: 1 Location: Swindon, UK

hi, i've had SM for about 5 years but was only diagnosed with it this year. i'm 19. i had a biopsy, which left a small scar, and was told that there was no treatment and i would just have to live with it. they are on my torso, but have recently started spreading up into my cleavage, round the sides of my ribs, and down as far as my bellybutton. so, obviously, i'm not happy with it. i went back to my doctor recently and demanded treatment and have an appointment in september to be reassessed. in the meantime i'm gathering as much information on treatment as possible to take with me, and that's where i came across this forum! how many of you on here are in the uk? i think some sort of support group is a good idea Smile

Steatocystoma Multiplex cause, treatment and diet for preven

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