When I first found out I might have Scleroderma, I searched the Internet to try and find out what I could. Bad move! When I told others I had scleroderma, the first thing I told them was NOT to surf the Internet for information.
What is shown on the Internet are the extreme cases, often of those that went untreated, and not the "norm" or 80% of what individuals with scleroderma will deal with. It's exactly what the specialist at Johns Hopkins said too.
The pictures are awful. The description of what happens to some is awful. It is bad enough to get those diagnosed with the disease, with no information other then what they read, to make funeral arrangements the next day.
As I mentioned in a previous post, every individual with Scleroderma is different. Some may get some of the advanced stages that the pictures/descriptions represent, but most won't.
So why look? After you are over the shock, maybe looking helps you be thankful in some way that you could be worse off? For me, it was something that I wanted to become familiar with enough to know I would try NOT to become one of those pictures. I will put in the effort and take whatever steps I was capable of NOT to become the extreme cases that are documented on these medical sites.
And why do all the medical sites seem to give the same info and portrayal of the disease? Do these sites plagiarize each other? They must since they are so similar. And, in many cases, the information is out of date or inaccurate. They certainly aren't what a specialist in the disease would describe the disease as. Because of this, other then superficial information, I consider any of these so called medical sites inaccurate and possibly detrimental to anyone looking at the sites as being an authoritative source.
There's even information on sites that specialize in scleroderma that is out of date or bordering on sensationalism.
So if you're looking for information on scleroderma, and you are using the Internet as your source, please take anything you find with a grain of salt, even if you seem the same info on multiple medical sites.
Next post I'll describe what happened at Johns Hopkins and my meeting with a top specialist.
Tuesday, January 30, 2007
How scleroderma is portrayed on the Internet
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4 comments:
I look forward to your continued comments, and also alternate treatments, as the medical industry seems to be at a loss to provide any regeneration.
I too look forward to your continued comments.Scleroderma is not a pretty disease and there must be more research!! Although it seems as if there are many afflicted with this disease, it is unfortunately, classified as a "rare" disease. The more common diseases seem to get the exposure and needed funding. Any suggestions on how to change this?
I did the same thing as soon as i found out back in 2003 that i have scleroderma,i went to the internt.
I didn't really know what to think seeing them pictures. I did also see a Professor of scleroderma at John Hopkins Hospital.
Still i hope some day they will find a cure.
QUESTION;- if only the fingers are effected can't they operate and break them? and they can be reabiliated,and healed on there own?
Regarding the question about fingers, I imagine it's the tendons and muscles (connective tissue) and fibrosis that is what causes the curling of the fingers. Breaking the bones I don't think will do anything to address the problem.
But that's just my guess on why.
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