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Is It Sclero, Sd, Scleroderma, Or Systemic Sclerosis?


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#1 Shelley Ensz

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Posted 03 April 2007 - 05:14 AM

Systemic sclerosis (SSc) is the official medical term for what we commonly call "systemic scleroderma", which can refer to Limited/CREST and to Diffuse forms of systemic sclerosis (SSc).

The localized forms of scleroderma, that affect primarily the skin, are called Morphea Scleroderma and Linear Scleroderma, or for short, just Morphea and Linear.

Over the years, scleroderma was shortened to "SD" -- among patients, but not really for medical use. The "SD" abbreviation really swept through the ranks with the introduction of the Internet, as we are always seeking easier ways to type things online. So, for a great many years, the words above were the only "real" words flung about in regard to scleroderma.

When I wanted to start the "Scleroderma from A to Z" website, I had to really scramble to find an easy domain name. All the good "scleroderma" domains seemed to be taken; and "SD" was too short (and I am sure, probably taken) to be helpful. So I took it upon myself to shorten scleroderma to just "sclero" and thus sclero.org was born.

In the process, somewhere along the line, "Sclero" supplanted "SD" as the slang term for ALL types of scleroderma among patients and adherents of our site. Nobody ever intended it, it just sort of happened. It is definitely understood in the online scleroderma patient community -- and even among many of the scleroderma experts, many of whom are the biggest adherents and boosters of our website and nonprofit agency, throughout the world.

However, the vast majority of medical professionals hardly know what "systemic sclerosis" is, not to mention "scleroderma" and I've heard more reports than you can imagine of doctors calling systemic types "morphea" and vice versa. I'm not sure that "SD" ever caught on very far in the non-scleroderma medical community, and most patients didn't want their doctors to think they had a South Dakota disease, so they probably used "scleroderma" as their reference term in discussing things with their doctors.

Now, the "sclero" slang is so pervasive online, that many people (especially those who are newer to this -- as in the last decade) assume that "sclero" has always been the widespread term for "scleroderma" and that their doctors will thus naturally understand what they mean when they say they have "sclero".

But, alas, the doctors are far more likely to look at us cross-eyed, wondering what strange illness we have just invented! So for discussing things among ourselves, any terms work (although far fewer people are likely to even recognize the SD abbreviation anymore) -- but at the doctor's office, be sure to always use the full medical term for exactly the type of scleroderma you have.

Then again, some doctors get mad if people with Morphea or Linear only refer to their illness as "scleroderma". They think the patients are trying to be misleading, since they think of "scleroderma" as only referring to the systemic varieties. So those with Morphea and Linear would be well served to NOT give the full name of their illness, but just the first name of it, when dealing with doctors.

And since there are so many different types of sclero, varying drastically in their severity, too, it is easy for any of us to assume that everyone else has the same type we do. Or that there is some common treatment that we all share. In reality, it is a very individualized illness and we may all have a different experience as patients. So when swapping symptoms or treatment information, keep in mind that what one person is taking may get very raised eyebrows when we suggest to our doctor that we might need it -- the treatment might be for another type of scleroderma, or constellation of symptoms, entirely.

Have you flung about any nicknames for scleroderma outside of the online groups, and had anyone understand it? Or have you felt confused when you were met with befuddlement? If so, now you understand how and why the slang terms have (very inadvertently) changed, over time.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#2 oddone

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Posted 03 April 2007 - 11:55 AM

I agree with Shelley, you should always use the EXACT name of the diagnosis given to you when explaining your illness. As you can see Scleroderma covers a wide variety of "types", and with it being so rare in the medical community, its the only PROPER way to get the info out there.
You can always shorten it up later when you are sure that your doctors. are on the same page as you.
With so many postings as to how the medical professionals treat their patients negatively (for knowing too much re: "internet surfing" etc,), if we can give them back the exact information we have received, we may be given a little more creditability.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)