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New To The Forum And Full Of Questions


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#1 josee

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Posted 07 September 2007 - 08:42 AM

Bonjour,

My name is Josee, from Quebec, Canada. Please, excuse my mistakes. I read English much better than I write it.

I am 45 years-old and I have a sister who has been diagnosed with scleroderma about 3 years ago. She has such a severe gastroparesis due to her condition, that she has been tube-fed since October 2004. Her name is Sylvie and she is 48 years-old and would certainly be the one writing if her English was better.

We both have questions about botox and scleroderma. She is to receive an injection of botox next week, Thursday, September 13th in the hope that she may start eating again.

Sylvie and I are wondering were we can get more informations about that procedure. We certainly worry about side-effect and the worth of undergoing that procedure. I saw in your forum that someone mentionned botox injections. That raised our hopes that maybe someone will read our post and be able to direct us to a site where we can get as much info as possible.

No need to say that both Sylvie and I are thrilled to find out that your site exists. It will certainly help her feel less lonely in her condition. We intend to keep in touch and read regurlarly about other persons going through was Sylvie goes through.

Thank you for your help and support...and once again, sorry for the mistakes.

Josee

#2 jefa

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Posted 07 September 2007 - 10:09 AM

Hello, Josee, and welcome to the ISN Sclero Forums. We hope you and your friend will feel welcome to read and post in spite of language difficulties. (You seem to be doing fine with the language, by the way.)

I hope you can find some useful information on botox for gastroparesis in this Mayo article on Gastroparesis.
Warm wishes,
Jefa

Carrie Maddoux
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#3 nan

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Posted 07 September 2007 - 03:22 PM

Josee,
I am impressed with your English. I took many years of French, but I couldn't begin to write to you in French. I am so sorry to hear of your sister's diagnosis. You have come to the right place for information and support! I am sorry that your sister has had to be on a feeding tube. I haven't heard of the botox treatment. I hope that it will work out for her. Meanwhile, take care of you and your sister. You are a great sister!
Nan

#4 janey

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Posted 07 September 2007 - 05:41 PM

Josee,oir
Welcome to the forums! I'm sorry to hear that your sister has been dealing with scleroderma and its related symptoms. She is lucky to have you taking care of her in so many ways.

Jefa has provided a great link from Mayo with many treatments for gastroparesis. Apparently, the treatment with botox hasn't been studied a lot but there have been a few small studies here and there. Here is one I found on PubMed.

Endoscopic pyloric injection of botulinum toxin A for the treatment of refractory gastroparesis.

Here's another from Medicinenet.com that explains the procedure:

What is new in gastroparesis?

Please keep us up on how your sister is doing. I hope this procedure works for her. It does look like it has been successful for some.

Big Hugs,
Janey Willis
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#5 josee

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Posted 08 September 2007 - 04:21 AM

Bonjour tout le monde,

Thank you so much for all your nice words of comfort and the info you gave me. Before replying, I went to check right away some of the links you suggested. It is full of information that will be most helpful. I've already called my sister and she is on her way to come here so I can share with her your warm welcome and the information.

Merci, merci, merci.

Josee

#6 Sweet

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Posted 08 September 2007 - 08:10 AM

Hi Josee,

Looks like you've received excellent advice. I just wanted to welcome you. I'm really sorry your sister is dealing with this awful disease. Bless you for being involved!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)