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New medicine for Scleroderma? (Resunab)


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#1 NorthStarHope

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Posted 01 April 2015 - 02:53 AM

Hi , I just wanted to stop by and wish everyone a Happy Holidays!!

I was wondering if anyone else has read that they are testing this new medicine (Resunab) for Scleroderma. It sounds promising. Sometimes I know my sister feels like just giving up as it's such a struggle to make it through each day. It saddens me to watch her struggle like this; there are times I feel like we are running out of time before anyone will find a cure, but now it seems research is on it's way. I didn't know if I were allowed to mention the name of this medicine, but it is all over the internet. Anyway, I will continue to be very hopeful for a brighter tomorrow.

 

Take care everyone,

sincerely, northstarhope* :emoticons-yes: :emoticons-clap: :emoticons-i-care:


northstarhope* :emoticons-i-care:  :thank-you: 


#2 Joelf

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Posted 02 April 2015 - 06:29 AM

Hi NorthStarHope,

 

It's lovely to hear from you again and I'm sorry that your sister is having such a struggle at the moment.

 

Thanks so much for the interesting information about Resunab and I've included a link to an article about it in the News Forum.

 

Kind regards,


Jo Frowde
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International Scleroderma Network (ISN)


#3 Shelley Ensz

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Posted 03 April 2015 - 11:55 AM

Hi NorthStarHope,

 

It's always great to hear from you. Thanks for the tip on Resunab, as you see we've now included info on its phase 2 clinical trial in our Scleroderma Treatments and Clinical Trials section. Thankfully there is extensive research ongoing for scleroderma now, with many treatment advances in recent years.  

 

When I first started in this field, even a single clinical trial was huge news, now there are so many that it is hard to keep track of them all!  I'm sending big hugs for you, and for your sister.

 

She is very blessed to have your care, understanding, and abiding support. As you know, often one of the hardest things for people with scleroderma to deal with is the lack of concern or comprehension on the part of family members and friends.  It's often like a "Say what?" followed by total tune-out, at a time when people most need their understanding and support.

 

:emoticons-group-hug:


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.

#4 NorthStarHope

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Posted 05 April 2015 - 03:21 AM

Dear Shelley and Joelf and Everyone,

Thank you so much for your response. It is so nice to hear from all of you also!! I know my sis gets so down so often and I try so hard to lift her spirits. Its like a milestone every day if I can see her smile or just see her be happy or even to get her to think positive and make it through another day. Life can be so cruel sometimes. When I first started all my research on scleroderma there was hardly any news; all I remember is people saying no cause and no cure. :emoticon-dont-know: Now all these years later (finely) they are making progress!! :yes: Thank Goodness!! Please take care everyone, and thank you once again for all your kind words . As I once said before I don't know what I would have done without sclero.org , you sure have been there for me through some very rocky roads. ( It truly has been like having a guiding light through the darkest tunnel). :emoticon-hug: :emoticon-hug: :emoticon-hug: love you All!!
NorthStarHope*


northstarhope* :emoticons-i-care:  :thank-you: 


#5 Margaret

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Posted 06 April 2015 - 01:04 AM

<<<  As I once said before I don't know what I would have done without sclero.org , you sure have been there for me through some very rocky roads. ( It truly has been like having a guiding light through the darkest tunnel). :emoticon-hug: :emoticon-hug: :emoticon-hug: >>

 

 

Same here ! 

 

Take care, Everyone.   Think Spring  :flowers: :flowers: :flowers:

Margaret



#6 miocean

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Posted 06 April 2015 - 02:15 AM

I hope they do find some help for this terrible disease, a cure would be wonderful, something to stop the progression, a better understanding of how it affects the body systems, anything to keep others in the future from going through what we all have.

 

miocean


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#7 greypilgrim256

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Posted 18 May 2015 - 03:35 AM

I have been reading about Resunab for a while now.  I am keeping my fingers crossed.