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Need Help - My Sister is Suffering from Systemic sclerosis - Critical

Systemic sclerosis

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5 replies to this topic

#1 Satya

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Posted 03 December 2014 - 01:41 AM

Hi All,

 

My sister is badly suffering from systemic sclerosis skin disease, We have consulted many doctors but they are unable to control or cure this problem. Yesterday we get to know from the hospital that there is no hope at this stage as her lungs are affected by this disease and her life is threatened now.

 

Please help us by providing some details like where and how can we save her life by getting the right and proven treatment.

 

I can send more details and scan copy of final reports, please let us know if there are treatments available for the same,

 

Thanks and waiting for some positive response.

Satya

INDIA



#2 Joelf

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Posted 03 December 2014 - 02:13 AM

Hi Satya,

 

Welcome to these forums!

 

I'm very sorry to hear that your sister has Systemic Scleroderma and is so poorly. I have Scleroderma lung involvement and can understand how worried and anxious you must be feeling. Just to give you some hope and encouragement, I did receive treatment for my lungs which was very successful, so a diagnosis of Scleroderma Lung Involvement is by no means the end of everything.

 

I've included links to our pages on Worldwide Scleroderma Experts and MyConsult:Second Opinion from Cleveland Clinic and I'm hoping that the latter link will be especially helpful to you, as you can access it from anywhere in the world.

 

I do hope that you will be able to obtain some treatment for your sister and now that you've joined our community, please do keep posting and let us know how your sister is getting on.

 

Kind regards,


Jo Frowde
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#3 Satya

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Posted 03 December 2014 - 05:43 AM

Thanks a ton.. JO! You have shown some hope to us. I will go through the links given here and keep posted the updates and will ask for any further help of info required...

 blessings..

 

Thanks

Satya



#4 Amanda Thorpe

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Posted 08 December 2014 - 03:12 PM

Hello Satya

 

Welcome to the forums, I have sent a reply to your email enquiry which I hope you find useful. Jo has certainly given you some great links and advice. She can speak from experience when it comes to lung fibrosis.

 

The thing about scleroderma is that many a time it seems like the disease is going to succeed but people succeed instead! I know of a number of people, including myself, who have nearly been killed off by scleroderma but in fact recover. I certainly have seen that anything is possible.

 

Take care and keep posting.


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#5 alice1

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Posted 20 December 2014 - 10:03 AM

Have her ask her Dr. about Cellcept, generic Mycophenalate.  Many of us take it for the lungs.  



#6 Joelf

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Posted 09 February 2015 - 12:21 PM

Please note MyConsult does not currently handle any autoimmune disease, including any form of scleroderma (localized or systemic).

 

Kind regards,


Jo Frowde
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