My 16 year old son was recently diagnosed with Steatocystoma Multiplex Suppurative. He has an atypical disease that is behaving atypically. Lucky us! The majority of his cysts have been in the perianal area. he has had numerous surgeries as these cysts rupyure easily and destroy the surrounding skin. Currently he has two large slow healing wounds on the inside of both butt cheeks. Yesterday he found a huge one (silver dollar size) in his groin. We are now facing his 5th surgery in less than a year. We live in Michigan and have been seen at the U of M. We have been less then pleased with his care at this point. I guess I am finding it difficult to believe or accept that there is NO treatment and NO one who can help us. we are willing to go ANYwhere. Suggestions???
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Steatocystoma Multiplex
- By sissybangs
- Posted November 17, 2008 at 2:21 pm · 1 reply
- In Finding a doctor
- Shared with the public
1 reply
- By locura
- Posted January 28, 2009 at 2:16 pm
- Report post
Hi, how are you?
Let me introduce myself, i'm 24 years old, and have the same disease as your soon.
For many years doctors told me i had a severe case of Acne, but i recently found out that it wasn't acne at all.
Since young, i always had this kind of dots (sorry for my english, it's not my language) but i didn't pay them atention, until i started having this cysts (more or less at your son's age, and in the same area). Please, don't take this the wrong way, but he'll probably get worst and worst, at least that's what happened to me.
My parents, just like you, took me EVERYWHERE, but it seemed to have no solution at all.
I took ROACCUTAN many times (accutan is the name in your country i believe) but it only made things worst. The onlything that prevented this cysts from infecting was the tetracyclyn.
I've been researching a lot, and found out about the KRT17 (it's a gene, an abnormal gene in our case, that causes this desease). With the help of a great doctor in my country, we discovered that there's some kind of treatment available. I have no further information, because my doctor is still researching and talking to the people at the MAYO CLINIC, JACKSONVILLE, where hopefully, we may find some luck.
You'll probably find it easier to contact them, as you live in the u.s, so my advice is go for it.
This is very recent, and i can't wait for my doctor to finish the arrangements so i can travel and get this done.
I hope you find my advice usefull, and PLEASE, if you can get an answer on this, it would me most apreciated.
Add to the discussion