Steatocystoma multiplex issue

Hello Everyone!!

I was diagnosed with Steatocystoma Multiplex (SM) when I was about 18 years old. I am now 36 years old. I've inherited from my father. My older brother and my grandfather have it as well. I always knew that I had it. My father and brother had some big ones and I used to see them pop them out. When I was little, I didn't have anything noticeable. I had some little ones and I wanted to pop them as my siblings did. It was until I was about 21 or maybe 23 where I've noticed it through out my body. I started to do some research on it. As we all know this is a inherited gene which is a mutation of Keratin 17 of the DNA code. So this condition is pass on. AND we know that there is no magical cure for it. There is no pill or medication we can take in order to go away. BUT I CAN SHARE WITH YOU ALL WHAT I HAVE NOTICED. I HAVE NOTICED THAT when I FEEL ONE OF IS GOING TO GET INFLAME I PUNCTURE IT RIGHT AWAY WITH A 11 BLADE(very tiny blade) OR WITH A SMALL NEEDLE( THAT ONES THAT THEY USE FOR DRAWING BLOOD) It relieves that pain and it leaves no scarring. Before when I did not do that. It was very painful process. I would have to wait for this thing to inflame and dissolute somehow inside my skin or worst, it would come out but it would leave a dark scar and it would take longer to heal. When I was in my teens, I got acne on my face so I used accutane and worked for me. I have no scars in my face. I 've noticed that I tend touch myself to feel the cyst. Sometimes touching them too much will make them inflame and noticeable so I try not to touch them anymore. It is very hard not to do it. Instead try to rub it smoothly as if you are caressing yourself. Before going to the doctor make sure you are ready to explain him/her about it. And unless they know something you don't be ready to explain to them how to drain a cyst. I had a doctor made a cut about an inch and then put some stitches to extract a tiny tiny cyst. I found one that had the patience to drain one at time. He would make a tiny incision and then with forceps would get the wall cyst. If it need it a stitch he would put one. Most of the time it was not necessary. I have not tried the laser procedure yet. I would like to try it someday. If you see me, you would probably would not notice it. But believe me I do have a lot them and only if you look at me very closely or you rub me you would know. It's a little bit more noticeable without my shirt. There is nothing we can do about it but if we can UNITE and share information we can probably find a cure. So if anyone knows of any articles, procedures, medicine, websites please share them and check periodically for any updates. Does any one know of a website which is just Steatocystoma Multiplex?