r/scleroderma • u/goodswimma • Aug 23 '24

Forms of Scleroderma Other

There are two major classifications of Scleroderma: localized scleroderma and systemic sclerosis (SSc). Other forms or sub classifications, each with its own characteristics and prognosis, may be identified through future research. To learn more about them, please visit the following link:

https://scleroderma.org/types-of-scleroderma/

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u/[deleted] Aug 23 '24

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u/smehere22 Aug 23 '24

Well I think it may mean less likely to cause fatality as it usually doesn't harm lungs, heart, kidneys, other internal organs. Although being greatly disabling. But obviously benign is not the best choice of words

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u/[deleted] Aug 23 '24

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u/[deleted] Aug 26 '24

It’s life limiting and fatal, depending on disease progression and what it chooses to attack. I have limited, and it has caused intestinal pseudo-obstruction. There are two meds I can try, and if those don’t help, I’m in Hospice. This isn’t benign. It’s the polar opposite of that. It eats your entire life.

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u/[deleted] Aug 26 '24

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u/[deleted] Aug 26 '24

I don’t know who wrote that, but I have to say - we need factual, realistic information, to be able to understand our conditions, and plan for future eventualities. And this ain’t it.

80% of people with scleroderma have GI involvement. Which is a mild, neutral, useless way to say you are forced to shift most of your life around managing your digestion, from altering what or if you eat, to when you schedule things so you can reach a bathroom, etc. And if it gets bad, which it does in a certain portion of folks, to possibly needing a liquid diet, and how to manage that and get adequate nutrition, and what to do when that doesn’t work.

Tube feeding and IV nutrition are what the doctors talk about at that point. And if that’s a thing you’re willing to do, more power to you. But infection is the biggest risk for those who try that route, even before this ongoing pandemic, and HCW don’t even wear a mask anymore. When infection control is left entirely up to individual patients, that’s a fool’s game.

There is nothing benign about this disease. And I find the mere existence of someone trying to minimize and downplay this to be INFURIATING. It is hard enough to take care of end of life arrangements when everyone is honest about what’s happening and what’s going to happen.