I have steatocystoma multiplex. 

The cysts starting appearing when I turned 18.

I went through years of misdiagnosis, forced to take a pregancy test, and get stares from nurses who were hesitant to touch me.

In my mind, I was thinking, "They think I have chicken pocks, I have herpes (which I don't!) because their faces are almost grossed out when they look at my chest.

I finally got a doctor who would treat me, but my mom dropped me from her insurance. Now I'm back on my own again, and I have a dermatologist who tells me that I have to live with the painful infections, the frequent pain in my joints, and the shame of having to cover up and endure the summer heat waves.

I can't wear a pretty dress. I can't wear a bathing suit. I don't do it because I don't want to explain myself to anyone!

...and it seems that the medical research in this country is years, if not, decades behind. Remember the dermatologist who told me that I have to live the rest of my life like this? 

Guess what? Two doctors successfully treated a family who suffered the same condition in Turkey in 1996 and had NO complications, NO returning cysts. Here's another one: this past July, doctors in China have improved the technique for removing the cysts, and their sacs and they don't come back!

In both of these treatments, patients had minimal scarring and the cysts NEVER RETURNED! EVER! So what does this tell me?

 

Steatocystoma Multiplex, in my opinion is not so rare if biologists and dermatologists have given enough effort to make treatments available for people who suffer....in every other country but this one! Why? Why is this media-driven superficial society refusing to help people who have a real problem?  Doesn't every Hollywood, fashion critic, or tabloid reporter want everyone to feel good about themselves?  Is it too time consuming? Doctors and plastic surgeons can't make money off of a real illness?  Is the elevation of self-worth too much to ask?

Look, I don't have the money to pay for this, but I would love to participate in a medical study of this type of treatment. I would make monthly installments!  I would consider studying abroad if it meant that I could have the shame lifted off of my shoulders.  

 

Don't take what you have for granted. Steatocystoma Multiplex interferes with every aspect of a person's life, like it does mine. I have never gone on a date, never worn a pretty dress, or wore a swimsuit in my adult life. I don't have any friends locally.  I can count on being alone for years to come. 

 

Thank you medical specialists of the United States of America.

• skincare
• dermatology
• medical-problem
• depression