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Q&A Session with Founder of the ISN

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Dear all

 

I have not been around alot lately due to the fact that I was battling my diasease in ICU on and off every two weeks or so for the last few months......

 

Just before I went into ICU, I had asked Shelley if she would be prepared to do a Q&A on the issues relating to scleroderma for my website www.care.tv which offers video interviews on a whole range of healthcare topics. It is inked on this site's scleroderma stories collection page: http://www.sclero.org/scleroderma/support/stories/story-collections.html

 

 

I was really happy when Shelley agreed. It is now available to be read in full. Please feel free to leave your comments. It would be very much appreciated.

 

Kind regards

 

And of course warm hugs

 

James

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My pleasure Carrie.

 

I only wish my CARE.TV was more established, (only been live about 4 weeks) so that it would reach a wider audience before getting put away in the archives . Oh well, I guess a follow up podcast in six months may do the trick!!!

 

 

I do hope that everyone from the Sclero forum gets to read the Q&A. Shelley has some really good words of wisdom for those of us who think we just can't take another day of this that or the other....

 

Warm regards to everyone here

 

James

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James,

Great interview James and Shelley!

 

Thanks for posting it on your site and for setting up such a great site. One more great effort in getting the word out.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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James,

 

That is a really interesting interview. I enjoyed reading every word. Thank you and thank Shelley for all the work involved.

 

Sherion

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Thanks Sherion and Janey for your kind words.

 

Just want to tell everyone to what I already alluded to in the interview: I have been misdiagnosed with Scleroderma. My diasease is one that affect the blood vessels of the lung - originating as an autoimmune disorder, that the pulminologists belive eto be some sort of lupus or Wegeners - so the frustration of certain diagnosis stilleludes me, althgough the pulminologists really do believe it to be one of these two.......

 

Any which way, I still love this forum, which is why I asked Shelley if I could do the interview - you guys are the best, we are all in this together no matter what the autoimmune diasease and no matter where it chooses to strike.

 

I have been out the hospital now for two weeks and three days now and my breathing is still stable. Whether the cytoxin treatment is starting to kick in or the very high dose of steroids I am on, I dont know.

 

I do know that I am eternally gratefull not to be in ICU - it is not a pleasant place to be.

 

Please keep on visiting Care.TV, more bloggers are coming on board and we will of course be covering autoimmune diaseases and related medical breakthroughs whenever we hear about them.

 

May everyone get the good health they are searching for and the peace of mind that just might make that journey quicker

 

James

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Thank you, James, for your initiative in doing the interview with me through your www.care.tv site and for asking some great questions, too. It is wonderful to get the word out about scleroderma and we all appreciate it!


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.

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