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Scleroderma Is Not A Death Sentence

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6 replies to this topic

#1 Dee


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Posted 08 January 2007 - 07:10 PM

Hi, I have really missed participating for several weeks. I have had surgery which side-tracked me. Thankfully, I'm doing well.

Yesterday I read a magazine article that gave incorrect information. The author wrote about a woman who had "systemic scleroderma, a fatal illness." I would like to respond, sharing that systemic scleroderma is usually not fatal. It would be very unfortunate for a scleroderma patient, family member or friend to labor under this misinformation. I know at first after my diagnosis, I felt I had been given a death sentence. As I became more informed, largely due to this great website, I gradually gained hope. I have improved and plan to have a long life!

Can anyone direct me to accurate information about the survival rates for limited scleroderma? I'm sure from the description of symptoms, the woman in this article suffered from severe diffuse scleroderma, but that was not stated.

Giving hope is one of the best tonics I know. Boy, I hate to think of someone suffering needlessly from misinformation. I figure Janey or Sherrill can probably locate anything!

Many thanks,


#2 barefut


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Posted 09 January 2007 - 03:51 AM

I read about survival rates relating to diffuse systemic scleroderma in the Medifocus Guide to Scleroderma. I believe its in the newsroom or accessable through this website. You can probably find info on limited there too.

#3 LisaBulman


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Posted 09 January 2007 - 05:02 AM

Hi Dee,
Welcome back... I'm glad you are recovering well.

Here is some info I found for you:

Diagnosis of Limited Scleroderma

Limited Scleroderma is diagnosed when there is tight skin limited to the fingers, along with either pitting digital ulcers (secondary to Raynaud's) and/or lung fibrosis. This is considered to be a "milder" form of Scleroderma. The skin of the face and neck may also be involved in Limited Scleroderma.

Limited Scleroderma often causes Raynaud's and esophageal problems. Occasionally other internal organ involvement occurs, but usually only after many years of the disease. The onset and progression of Limited Scleroderma is usually very slow, and the outlook in general is very good.(1)

I hope this helps!



Lisa Bulman
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International Scleroderma Network (ISN)

#4 janey


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Posted 09 January 2007 - 05:07 AM

Welcome back Darling! I was wondering where you had run too. Sorry to hear about your surgery, but thrilled that you're doing well. Hope it wasn't anything too serious.

From what I have seen about survival rates for scleroderma is that it is dependent on so very many factors that it's really hard to predict. I did find this study from ACR 2004.

[Changes in Causes of Death in Systemic Sclerosis Over the Past 30 Years.

A couple of exerts:

The mean disease duration at the time of death improved from 10-12 years prior to 1990 to 15 years since 1990 (p<0.01).

The percentage of non-SSc related deaths increased over this time from 30% to 57%

Over the past 10 years, SSc patients have had improved survival, longer disease duration at the time they die and are less likely to die from scleroderma related complications.

There is a chart showing the percent of SSc related deaths over time, but it does not separate lSSc from dSSc.

I certainly agree with you - Scleroderma is NOT a death sentence. We are all very lucky to be alive today with all of the new proven treatments and the new experimental treatments that are showing positive results. It's people like you with a long history of scleroderma that gives us all hope. Personally, I'm in for a very long fight. I've won a lot of battles thus far and as the hubby says "We'll win this war!"

Big Hugs,


Janey Willis
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#5 Shelley Ensz

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Posted 09 January 2007 - 05:19 AM

Hi Dee,

As it happens, systemic scleroderma is the most fatal of all the rheumatic illnesses. However, the prognosis isn't as thoroughly grim as it used to be, and you are right in that it is not always a death sentence or an immediate threat to longevity. Plus we have more treatments for symptoms now, and more awareness of the importance of consulting scleroderma experts, too.

But the statistics on it are rather complicated. Here's the section from our website that you want: Systemic Sclerosis: Prognosis and Mortality.

It is the localized forms of scleroderma (morphea and linear) that are not fatal.

Diffuse scleroderma more often has a rapidly progressive course (but not always), whereas limited systemic scleroderma (the type most people with scleroderma have) is more likely to have a lingering course, or perhaps even "burn out" along the way.

However, there are certain pitfalls to limited scleroderma (aka CREST) as well, such as the possible development of pulmonary hypertension. So regardless what form of systemic sclerosis a person has, they should always have regular (at least annual) monitoring and seek the best possible medical advice for their particular circumstances. For more information, see Types of Scleroderma.
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.

#6 Sweet


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Posted 09 January 2007 - 07:29 AM


Looks like you received a large amount of information for you to review, so I'll just welcome you back! So glad you are doing well after surgery.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 Dee


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Posted 09 January 2007 - 06:54 PM

Thanks to everyone for the great information. This is such a helpful and smart group!