It took a whole year before someone dx'd her. She had what looked like a large, faint bruise on her left thigh. The docs thought it was a fungus because if you looked closely it had shiny plaques in the middle of it.

But a year later atrophy had set in and was apparent. One thigh looked much smaller than the other and had a dark, veiny look.

We took her to the big city and they confirmed her dx. It's been a rough road since then. Her disease doesn't hurt her at all, but her leg is noticeably disfigured. They say the biggest concern is keeping it from reaching her knee joint and causing disability, but I am so confused. One doc says it is no big deal and kids outgrow it. The specialist says it is serious. I don't know what to think.

We do not have health insurance and have to drive 3 hours every two months to see the doc. We pay cash for the visits and the meds, which are expensive, but that is not the big problem. We can handle that part.

It's the part where no one is really monitoring her bloodwork, making sure her organs are not affected by the meds. It's having to wait a month to be seen. It's the doctor actually yelling at me when I called him after hours once because her lesion felt ice cold to me and I was terrified it meant loss of circulation. All I needed was basic scleroderma information that only he could give me to help me decide if I was overreacting or should take her to the e/r.

It's been two years since the lesion first appeared and we still do not know if her life expectancy is normal, if she can have kids, etc. I don't know whether this is no big deal or a great big one. In my frazzled state I found this website. It sounds like a Godsend. Already I can see our situation in all the posts.

I plan on reading every single post and hopefully learn more than I have so far.

My daughter has the right spirit for this. She is not bothered by the deformed look and says it doesn't hurt a bit which is so bizarre considering how scary it looks. There is this strange callous on her foot so now I am pretty sure it is either another lesion or it is a callous from a limp that we do not notice.

At this moment, her leg is very atrophied. Her disease went into remission pretty fast from meds, but as soon as he reduced her dose of prednisone (she also started having trouble taking her meds and would throw them up), it has worsened quickly. The atrophy is cutting into her groin now and looks like someone has fileted her thigh on the inside. I don't mean to be graphic, but this is an upsetting night for me as I don't know whether to be worried or not. I want to find a different doctor, but there doesn't seem to be an abundance of pediatric rheumatologists. The only other ones are not taking new patients. It is frustrating. I handled this so well. I wasn't worried. I thought, "heck, they will control this". But once it started worsening fast my confidence fell. You realize how mortal you are. And nothing is worse than realizing your child is mortal. You want them to grow up and you want to protect them from bad things. Her attitude is fine. It's mom's that isn't so good.

I just want to get it under control again and understand it better. Know the prognosis. And have a doc who doesn't yell if I have questions. It's not easy being far away and with no insurance. But I am confident that a doc who cares will be able to treat her successfully. The expensive therapies and MRI's may be a problem, but we get her the meds and the visits she needs. The doc understands her disease, but he seems too busy for her all the time. It's like a people mill. I leave bewildered. I'm not a doc, but most mom's have basic knowledge. If he helped me understand what to expect I would feel better tonight.

If anyone wants to talk to me about their story or share information, please feel free. Life has it's trials, but when you get something uncommon, it is hard to find help and information.