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Very interesting story, would you mind disclosing your age as well? I've heard stories from multiple people explaining that after a certain age their cystic growth had stopped occurring as frequently
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Where are you from, many derms in the US aren't as knowledgeable about SM and are very dismissive, if you could suggest a dermatologist and location that would be great, I'm open to travel
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I just turned 27 years old. I believe the many of ones I have left may be keloid scars from when I was lasered or old one that have hardened and are tiny and I may need to get removed by a dermatologist. I believe sugar and insulin has to do with this condition and how our bodies may not process this well and we end up with these cycst. Not sure.
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Hi guys,

I just wanted to propose a few solutions.

To get rid of the cysts, the only way to do this is to surgically remove them. After extensive research, the best method seems to be the ‘laser pinhole surgery’. This has advantages over mini incision surgery because the laser will coagulate the wound area, giving the surgeon a clearer view of the site so he/she can extract the cyst wall entirely a bit easily. Google this surgery and there are couple of clinics in Korea that perform this technique. Having this surgery will result in minimal scarring and some hyperpigmentation that will fade away after about 6 months to a year. I’ve seen cases where 500+ cysts have been removed with almost no scarring and only some hyperpigmentation that will resolve with application of Contractubex and Hydroquinone cream post surgery. I personally had about 100 cysts (10 on each my forearms and 70 in my trunk area) and got this procedure performed in Korea to get rid of all of them (took about 4.5 hrs in one day) and the cost was about U$2000. Make sure that your surgeon will use 3M Steri-Strips or skin glue to secure the wound, not suture as using suture will create a noticeable scar.

In terms of whether your SM is caused by a genetic mutation in KRT17 gene, you need to look at your family history and get the gene testing done. I was told by the surgeon who operated on me that about 70% of the people with this condition do not have a defect in KRT17 gene (I’m not sure where he got this statistic). So, if your family doesn’t have this condition and only you do, you must have your gene tested to know for sure. Ask your doctor to requisition a gene test for you. Or join Pachyonychia Congenita Project and enroll as a PC patient. They will do the gene testing for free after you answer their questionnaire. If you do not have a defect in KRT17 gene, great. You can move on with your life after having the surgery done.

If it turns out that you have a defect in KRT17 gene, then you must manage this condition. It means that you should get the laser pinhole surgery every so often to get rid of the cysts. If you do decide to have a family, then it is better to conceive using what they call PGD (Preimplantation Genetic Diagnosis). Basically, you can make sure that your child does not inherit the faulty KRT17 gene that you have but will inherit the perfect KRT17 gene that your partner has.

For your existing scars caused by inflamed cysts, you have to get this treated by a quality plastic surgeon. Excise the scars or use laser or any other methods the doctor recommends. There are tons of research material on scars so I’m sure you guys can find the best one that fits your needs.

Other than that, don’t get so depressed about having this condition. Life is too short. Go live it!

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Hi there, would you be able to tell me how you applied the lactic acid in more details and where you got it? I’ve been dealing with this my entire life. ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use

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Can you please pass on your doctor in korea’s Contact please?
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Did you find a doctor in Singapore yet?
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hey... tried to email you. but it didn't delivered.
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Did you end up getting a tattoo over it? I'm hoping to do the same!
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Hi mam. What is the name of your doctor and his contact no.? I also have steatocystoma multiplex.
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Hi, may i know what clinic is this? I also have the same problem and would really appreciate it alot if you would share with me the clinic. Thank you. Please email me at ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use

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I don't know how old your post is but I am reading it on May 15, 2019 and am so encouraged by you and your wife's story! Thanks for sharing!
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