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I don't know if anyone out there who has SM and PC checks this forum anymore, but I just need to vent.

I've found that I am super depressed because of my condition. I cry a lot. I'm 22, a female, and have numerous wounds in my groin area that open, bleed, then heal every once in a while only to reopen again shortly after healing. It's painful, and it's also frustrating to look at myself and remember how beautiful I once was and how horrible I look now. I also get cysts occasionally under my arms.

I have known about my disorder ever since I can remember. My father passed it on to me, and the only thing I can say about that is I feel so badly for my father, because he has the disorder ten times worse than I do. Three out of four of his daughters were born with the disorder, and it makes me think twice about having children of my own, because my sister had a baby who had it passed down as well. This breaks my heart because I always wondered what it would be like to become pregnant, to have a baby living inside you, and to have your own child to hold in your arms. But I couldn't stand it if I happened to pass it on to my child. So adoption is my alternative.

I should not complain too much; I have a boyfriend who loves me just the way I am. Yet I am plagued with thoughts of hatred toward a god I do not believe in. Sometimes I look at myself and break down. What is suppose to be a beautiful part of me is actually very ugly. The most horrible part of it all is as time goes by, the sores in my groin multiply. I asked my dermatologist what I would look like when I'm 40, and she said she didn't know. This just killed me. And the ironic part of it all is doxycycline works well to stop the sores from opening, but it is dangerous to take long-term because it kills ALL bacteria, good and bad. So I can't even count on medicine to help me anymore. I'm stuck with this disorder, and I'm stuck with my sorrow.

Oh, woe is me, you are probably thinking. And I'm sure many of you have different disorders that are just as bad if not worse. But I am saddened by my disorder and cannot think of a way to make myself happy to be alive.

This post does not warrant a reply, but if you do feel moved to respond, please do not make me feel worse by telling me how much worse you are with whatever condition you have. It will do the opposite of what you think it would do, trust me.

Thanks.

Xaleia

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I am not going to tell you that my condition is worse, only that i understand. I am 41 yrs. old and I did not find out what this condition was called until I was about the age you are now. I will say that you are so very lucky to have someone who overlooks your scares. When you talk about your "cyst" though, I am not sure I quite know what you mean. In my case, I have small bumps just under the surface of my skin. I am a dark brown black woman. Most people of my nationality and skin tone vary in shade depending on the area of the body. So in some places you can see these bumps but you can feel them everywhere they reside. they are more concentrated on my front torso (breast and all). Not sexy. on my upper arms down the sides of my torso, on my bottom, on my thighs, the inner part of my lower arms and even a little on my pubic area. Sooo not sexy. I also have small, deep boils. They are very painful especially near the end and seem to be more concentrated in different areas at different times. (This is were I am unsure. I dont know if by cyst you mean the little bumps,or the sores. I am also unsure if your sores are the same as my boils, because even though my boils are concentrated on different parts that area always gets its fare share.) And so few dermatologist even know about this condition I cant even get answers on weather these mini-boils are one of a multiple form of this disorder or if I have two different conditions. Your PC is a new term for me. Where did you learn it? Do you think my "mini-boils" and your sore are the same thing? I know you are sad about your condition. but please dont wallow in this long term. The fact that even other people with scars can usually just say, 'I was burned', or' I got cut' and have everyone know and understand them makes or scare even harder to deal with. Most people have never even heard of this stuff. And the sores gross us out sometimes, what about intimate others? But even though I have issues with this stuff. I am so beautiful in so many other ways. And so are you. Please reply.
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Hello everyone!

I have SM since teenage years. I have it in my arms and had surgery for several SM's but still have more.

Anyone can tell their sorrow and agony about this imperfection. At least this kind of imperfection is not a (sort of) communicable disease.
It's just ugly to look at.

We can't hate anyone for this, not even our parents, not even God (whom some people don't believe --- and why hate someone whom you don't believe at --- if you think he/she is worth the hate/blame then I suppose, you believe that he/she must have something to do about it.. uuuhhh... )

The point is, SM developed a low self-esteem towards one-self (that includes me), Let's not focus on that benign condition but rather overcome them by living normally. Focusing on this imperfection would not let us do our best in this life. I know, some people might think "yuck" but mind not their reactions. SM is not an excuse for a normal life. We can still work and play. Think about this, some people have more misery than having SM. After all, knowing this life's purpose is what that matters most.

Everyone, just take it easy. Cheers!
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I have both PC and SM. I have 3 0f 4 daughters in their twenties and thirties affected to a lesser degree. I also have a grandson age 3 with the same conditions. You problem is genetic and will require a genetic based cure. At this time only the symptoms can be treated but a real genetic cure is possibly only a few years away. A world wide research is currently being structured that may be able to help. They have gathered a vast amount of info from people like us and even have DNA markers to define the type of PC and SM as there are 5 or 6 gene areas responsible for the defect. I would suggest, if you haven't already, contacting the following project leader for more info on help and possibly becoming part of this group effort. This is a professional team of doctors and researchers that will be well worth looking into if you have been diagnosed with either Steatocystoma Multiplex or Pachyonichia Congenita or both since they are basically a manifestation of the same genetic disorder. From what I have experienced, men have more skin problems then girls but women seem to be affected more since they are held to a higher standard in the area of social beauty. I’m now age 61 and have a very difficult case of SM and PC. I found true love and have a wonderful family and you can do the same. It is now possible to detect this disease at an early stage in pregnancy with genetic testing. I wish you the best of luck and hope I’ve been helpful.


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I have both PC and SM. I have 3 0f 4 daughters in their twenties and thirties affected to a lesser degree. I also have a grandson age 3 with the same conditions. You problem is genetic and will require a genetic based cure. At this time only the symptoms can be treated but a real genetic cure is possibly only a few years away. A world wide research is currently being structured that may be able to help. They have gathered a vast amount of info from people like us and even have DNA markers to define the type of PC and SM as there are 5 or 6 gene areas responsible for the defect. I would suggest, if you haven't already, contacting the following project leader for more info on help and possibly becoming part of this group effort. This is a professional team of doctors and researchers that will be well worth looking into if you have been diagnosed with either Steatocystoma Multiplex or Pachyonichia Congenita or both since they are basically a manifestation of the same genetic disorder. From what I have experienced, men have more skin problems then girls but women seem to be affected more since they are held to a higher standard in the area of social beauty. I’m now age 61 and have a very difficult case of SM and PC. I found true love and have a wonderful family and you can do the same. It is now possible to detect this disease at an early stage in pregnancy with genetic testing. I wish you the best of luck and hope I’ve been helpful.

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