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Hurrah for Sclero.org!

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6 replies to this topic

#1 JJ-Knitter


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Posted 24 September 2008 - 04:43 PM

My rheumatologist mentioned today that the latest chest CT showed air in the esophagus and that it shouldn't be there. We both then got distracted and I forgot to ask more about it. So I came home, Googled "air in the esophagus" and guess where it sent me?! Ayup, here. The summary said "This radiological sign, although rare, should suggest Scleroderma and may be particularly useful in patients with "systemic sclerosis sine scleroderma."

Guess who has systemic sclerosis sine scleroderma... :P

I love Sclero.org and this forum is just wonderful. So Hurrah for the good folks at ISN and all my fellow sclerodermians. And thanks, too!


#2 razz


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Posted 25 September 2008 - 02:35 AM


Every now and then we hear about a rheumatologist who does his homework and provides a great service to his patients by educating himself about scleroderma. Your rheumatologist is one of them. Systemic sclerosis sine scleroderma is one of the hardest to diagnose. Sorry to hear you have been officially diagnosed but your doctor sounds like he's going to do the best job he can.

I agree this website has the most accurate and up to date information about scleroderma. Other websites even post links to our ISN medical information. I applaud Shelley Ensz and those involved with putting this award winning website together and maintaining its superior quality like no other.

Three things I do upon waking up each morning, let my dog out, make the coffee and log into ISN. I love this family. Everyone brings their mix of knowledge, experience and support from all over the world! Whether I'm looking up information, want to have a laugh, respond to a post or check to see how everyone is doing, I love it here. I say Hurrah and thanks too!


Live well, Laugh often, Love much

#3 jefa


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Posted 25 September 2008 - 04:02 AM

Yes, it is a great place for information and I found it the same way, JJ. Well, not the same symptom, but the same path. Each day when I read all the new posts and see how much help people have received from the wealth of quality information and unparalleled support of the members, I am glad to be in a position to contribute whatever I can to keep it going. There are links in the right column for those who wish to make financial contributions and also for those who think they have something to add as a volunteer. And each of us can also continue to support each other by sharing your own experiences with others who come here in need of help.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Margaret


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Posted 25 September 2008 - 04:48 AM

Hi Everyone,

Same here.......I don't know how I would have gotten through those first 9 months before Gareth got put on Plaquenil. What I learned about sine Sclero came from this site and because of this site I knew to push/ask for Plaquenil or other meds. Since Gareth couldn't relay his feelings/pains/symptoms/etc., everyone was so friendly and helpful in trying to sort out what exactly he was going through. You all saved me from the 'funny farm'......free psychological service!!!

Take care, Everyone.

#5 Amanda Thorpe

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Posted 25 September 2008 - 10:44 AM

Hooray for ISN particularly this forum. I wish I had found it earlier, when first diagnosed as it is so helpful to interact with others.

The knowledge contained on this site is awesome and a big thank you to all the volunteers who keep it going for love not money.

Thank you!

Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 Shelley Ensz

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Posted 26 September 2008 - 06:40 AM

Hi JJ,

I'm sorry you have air in your esophagus and sine scleroderma...but I'm very glad that we are all able to help provide such valuable information and support for you, too. Thank you for your "Hurrah!" for sclero.org.

Many of our members found us just through our Sclero Forums and aren't aware of the big picture...that we are an outgrowth of our main www.sclero.org website, which has over 2,000 pages in 22 languages and is operated by the nonprofit International Scleroderma Network. We've also published 3 books based on the website -- the Voices of Scleroderma book series includes over 300 stories by our members and articles by the top world experts in scleroderma.

We provide stellar research, support, education and awareness for scleroderma. Amazingly, we do all this with no offices plus with an extraordinary team of over 75 worldwide virtual volunteers -- many of them the very top world medical experts in scleroderma, and of course the tremendous forums support team, which is led by Carrie (Jefa).

We truly need and deeply appreciate everyone's help in tackling the enormous challenges of scleroderma. We make even the smallest contribution of talent or money stretch all around the world and back again by using our resources very wisely so that people can give with the ultimate confidence in knowing that they are making a truly significant difference -- for the whole world of scleroderma.

We thank all of you for your gratitude and support...and for your abiding caring and concern for each other than is shown every day in Sclero Forums. It is heart-warming for all of us to be part of something so special and enduring!
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.

#7 Nina


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Posted 26 September 2008 - 09:28 AM

JJ ,
Couldn't agree more. This is truly a wonderful site. The information provided is endless and very reliable. I tell others who want to learn about "autoimmune" diseases to come here also.
Wonderful people, wonderful info. and wonderful attitudes!!!
Much love,
Nina (DE)