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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 sdaniels

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Posted 30 June 2009 - 07:10 AM

Hello to all,

I am writing this message on behalf of my mother. She has been suffering from Scleroderma for 37 years and is undergoing chemotherapy right now. She is 66 years old, and lives in Turkey. Some of her fingers were cut a few years ago; however, ten fingers of hers have infection, and she has severe pain due to the wounds on top of her fingers. Her current doctor in Turkey told her that she should take Cyclophosphamide every two months for her liver is effected by Sclero. She will come to USA in three months. I am not sure if she needs this medicine since she will be here soon. Or, what other remedies some of you suggest that can help her? I would also like to know which doctor can help my mom during her stay in the USA. I live in Las Vegas, Nevada.

#2 Shelley Ensz

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Posted 30 June 2009 - 07:17 AM

Hello and welcome to Sclero Forums! I'm sorry your mother has scleroderma, and has had it for so long. I send my best wishes to both of you.

Look through our list of Scleroderma Experts to find the best one, including experts for your mother when she is in Turkey, if she doesn't already have one.

Here is our page on Cyclophosphamide; and also on Scleroderma Treatments and Clinical Trials. Basically, you'd want to look up her individual symptoms for treatment and lifestyle adjustment suggestions.

How long do you think she'll be able to visit?
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 janey

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Posted 01 July 2009 - 07:39 AM

SDaniels,

Welcome! I'm sorry to read about all of the recent problems your mother is having with scleroderma. You mentioned that she's had it for 37 years (which is amazing and something to be very thankful for. It's also encouraging to the rest of us.) Are these recent symptoms new or just old symptoms getting worse?

I'm not a doctor so I can't recommend or not recommend treatments, but I would strongly suggest that you read the studies at the link that Shelley provided. They will yield some excellent information on Cyclophosphamide. Does your mother's doctor in Turkey know that she is coming to the states? If not, she should mention it to him. He might adjust the treatment or hold off.

I hope you can find her a good doctor. Please keep us informed on how she is doing. Your mother is lucky to have you!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
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International Scleroderma Network (ISN)

#4 sdaniels

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Posted 01 July 2009 - 08:26 AM

Thank you Shelley.

#5 Sweet

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Posted 03 July 2009 - 01:27 PM

SDaniels,

Welcome! You are so sweet to be helping your mother.

Shelley gave you a terrific link in order to find the help your mom needs. I wish you the best!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)