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Scleroderma Dramatically Under-Diagnosed With Commercial Screening Method


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#1 janey

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Posted 18 November 2010 - 02:31 PM

Scleroderma Dramatically Under-Diagnosed With Commercial Screening Method.

New research suggests that up to 40 percent of scleroderma patients will not be correctly diagnosed with the disorder using a new automated commercial screening test for detecting antibodies. PhyOrg.com. 11/08/10. (Also see: Difficult Diagnosis)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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#2 Shelley Ensz

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Posted 19 November 2010 - 01:45 AM

So, just out of curiosity, am I the only one who finds this a bit bothersome?

Consider, it's an average of six years for women to be diagnosed with scleroderma -- that's in civilized countries with great medical care. Factor in that with the more severe forms of systemic scleroderma, it can be most fatal in the first three years. Then, voila, a new blood test comes out which guarantees that 40 percent of scleroderma patients will not be correctly diagnosed.

If you are still undiagnosed, read that article carefully because it means the precise type of test that your doctor orders (the old one or the new one; the old one being the best!) can make a huge difference in whether or not you show positive for scleroderma antibodies.

As if things weren't difficult enough, in the first place.

We will have a moment of Sclero Silence now, for all of our still undiagnosed sclero brothers and sisters. <moment of silence>

And now a big, comforting hug for all of us.

:emoticon-hug:
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.

#3 miocean

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Posted 19 November 2010 - 03:44 AM

I just sent this information to my niece. She has been very fatigued lately and is only 25. She is very busy, is a nanny for 3 kids, is going to graduate school and, of course, enjoys her life like at person in their 20's should so it could be nothing but lifestyle. I love her and worry about her.

If I hadn't asked to have that old ANA test run, I may never have been diagnosed and would have died of renal failure.

I, too, am concerned about this new test.

miocean
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#4 Joelf

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Posted 19 November 2010 - 03:49 AM

I've just read this and I must admit my first thought was "Hmm, that doesn't give me much confidence!!" :(

I feel very sorry for some of our members who are probably very worried (as I was in the beginning) and have had the bizarre symptoms of this disease, sometimes for many years, without a concrete diagnosis.

I was extremely fortunate in that I was diagnosed very quickly by a team of lung disease experts, who knew exactly what to look for and could actually recognise that it was Scleroderma, by the pattern of the 'ground glass' in my lungs.

Here's another :emoticon-hug: from me!

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#5 debonair susie

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Posted 19 November 2010 - 05:29 AM

Janey, great post but as Shelley and Jo mentioned, not very comforting news, that's for sure.

My hope is that the "Powers-that-be" take note of this, if they haven't already. Disconcerting,
to say the least, for many.
Special Hugs,

Susie Kraft
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#6 Margaret

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Posted 19 November 2010 - 02:12 PM

Hi, Everyone ,

On the flip side, though, you have someone like Gareth who does have the old positive ANA (1996), speckeled pattern, diffuse cytoplasm and still no Scleroderma diagnosis because he doesn't have the skin issues....only internal. He's also got the + AntiRNA Polymerase 1/111.

Take care, Everyone.
Margaret

#7 Shelley Ensz

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Posted 19 November 2010 - 05:06 PM

Hi Margaret,

That's a good point! Even with positive blood tests, diagnosis can be nigh impossible. So what's to happen when the blood tests don't even work properly? At least there was a fighting chance when there was only the "old" ANA test available.

Give Gareth a big hug, just from me, okay? :emoticon-hug:
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.