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6 replies to this topic

#1 millerscrossing


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Posted 21 February 2008 - 06:09 AM

Hi guys,

A lot has happened since I last posted about a month ago.

First off, I have been told I do not have scleroderma. I have a lung alveolar hemarrhage autoimmune disease which means the small vessels in the lungs get inflamed and sometimes burst .......

Botttom line I am off cellcept and on cytoxan and am due a monthly dosage, the next scheduled for the 29th of February.

And yes, I have been readmitted to hospital again, although am out for now.

Whilst I do not have sclerodrerma, I feel that this forum, the people who offered me hope and hugs during the worst period of my life, I have and will not ever forget and am dedicating the rest of my life - however long that may or may not be - to making a difference. To being a source of suppport to people with ANY moderate or severe illness or disability.

To that end, I started a website called CARE.TV which is linked on the main ISN site at Scleroderma Story Collections. It contains interviews that I made of exposees on dangerous drugs by meeting up and discussing them with the victims, stories about where to find support for different diseases such as scleroderma, and will soon have a collection of inspirational videos of how people beat their odds at cancer, or managed to stop smoking etc etc,

Shelley - who is a source of inspiration to me, given how she started the ISN from scratch has agreed to do a Q & A interview for CARE.TV followed a little later by a phone interview, downloaded as a podcast.

If any of you have any questions you would like me to ask Shelley about scleroderma or about the ISN she founded, please do not hesitate to contact me and I will include as many questions as I can.

Best wishes

James Barclay

#2 debonair susie

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Posted 21 February 2008 - 10:19 AM

James, I wish you all the best.
Take care of yourself.

Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 Sweet


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Posted 21 February 2008 - 11:30 AM

Hi James!

So good to hear from you! Wow, sounds like things have really taken a turn for you. I'm impressed with the direction you are going. I wish you the best.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 Snowbird


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Posted 21 February 2008 - 12:16 PM

I wish you lots of luck to James....
Sending good wishes your way!

#5 janey


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Posted 22 February 2008 - 02:02 PM

I'm glad to read that you don't have scleroderma, but sorry about the other disease. At least you know what's really going on.

As far as CARE.TV is concerned - AWESOME!!!! I look forward to checking it out and seeing how it progresses. Good luck to you and THANKS!

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)

#6 Margaret


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Posted 22 February 2008 - 04:04 PM

<<lung alveolar hemarrhage autoimmune disease >>

Hi James ,

I don't know which is the worst of the two evils? Is that treatable? Take care and best of luck with CARE.TV.

Take care, Everyone.

#7 barefut


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Posted 22 February 2008 - 10:22 PM


I am glad you have a proper diagnosis and can now get proper treatment. I hope it is something that can be stopped.

As for your new venture, congratulations! I am inspired by your motivation and excitement. I do have some questions for you to ask Shelley. I will PM them to you.

Thank you and good luck with everything!