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My Wish

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#1 millerscrossing


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Posted 09 December 2007 - 08:31 PM

I am from New York, and on tonight's chat, I spoke to some really decent people. I told them about how my disease has been progressing recently and asked them if Sclero.org had some sort of support network.

I need to speak with someone real soon. I almost died two weeks ago, my lungs were so infected, I was put into a self induced coma,my kidneys failed and the doc warned my family to prepare for a funeral.Well instead I was checked out the entire hospital 10 days later.

kind regards

James Barclay

#2 Shelley Ensz

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Posted 10 December 2007 - 02:15 PM

Hi James,

I am sorry to hear what you have been through and glad you lived to tell about it!

Thank you for inquiring about support services and for your offer to help, as well. We have many ways to offer support to people. Just follow the SUPPORT link at the top of each page for worldwide support groups listings (in 22 languages). You would probably be interested in the Long Island support group. Contact info for that is:

Linda Leichman
Phone: 631 981 6965
Email: [email protected]

We also have a toll free number, 1-800-564-7099 for information (and for ordering books, awareness bracelets, etc.).

Sclero Forums is, of course, open 24 hours a day for sharing information and support with people all around the world.

And then there is the collection of personal stories on our main site (over 1,000 of them). You can submit your own story or email people who have posted theirs. Plus the amazing Voices of Scleroderma book series -- all three volumes written with stories of visitors to sclero.org -- many of whom are members of Sclero Forums, along with terrific articles by the world's leading experts in scleroderma.

We urge all our members to exercise vigilance and caution in regard to meeting anyone that they have known only through the Internet. So although you can send a Private Message via the Forum to any member, please try to keep in mind basics like meeting in a public place, etc. and decline opportunities if you don't feel entirely comfortable with the plans.

Members are not trained to provide professional counseling services to each other, of course, so for in depth counseling and support, we ask our doctors for referrals to a counselor who can help with adjusting to chronic or severe illness. Other resources on that are availabe on our Emotional Adjustment and Scleroderma pages.

I hope these resources are of some help to you.

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 millerscrossing


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Posted 10 December 2007 - 02:50 PM

thanks Shelley that was indeeed a helpful email.

i guess if one has to compare it to something , I would compare it to someone who has just got clean but could do with the sisdom an dknowledge of someone who has 10 years clean, has seen out the bumby trail and is still around t tell the tail.

Lao, to be able to examine the human features that change over time, I know that may sound bad staring at somoenes hands lefs, feetand face, but talking for myself now, if that bought some level of peace and acceptace to a new sufferer, I would benefit from the experinace twice as much.

Ther e is no cure yet, so why pretend , we have what we have, and that is a support system that could lead to wonderful friendships and of curse you are right, your gut will tell you f you are meeting up in the right plces.

am james I live in Flatbush Brooklyn and would love to hook up wiyth people from a distace of1.5 hours drive away max or more , ifwe both drive in to a central location.......

Kind regards