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Quality Of Life With Scleroderma

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#1 lclark



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Posted 02 January 2007 - 04:53 AM

My mother has had Scleroderma for almost 20yrs. She is presently in the hospital because she was dehydrated. Her doctors have been giving her IV and she received 2 bags of blood but still she still feels weak and sore! I want to move her to the Scleroderma Center in Philadephia. I think they would be able to make her feel more comfortable. I don't want to see her suffer.

Do you have any advice?

Thank you!!!!

#2 janey


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Posted 02 January 2007 - 06:04 AM

Dear Clark,
Welcome to our forum! I am so sorry you are here because of your mother having scleroderma. It sounds like she has been dealing with it for a long, long time. Was it pretty stable for several years and recently started causing more problems? Are there new problems coming up causing her to be hospitalized?

I'm not familiar with the scleroderma center in Philadelphia. I'm assuming you are talking about the one at the Scleroderma Center at Thomas Jefferson Hospital. Have you contacted them yet? It does sound like she could get good care there. I would definitely contact someone at the scleroderma center directly and see what you needed to do to move your mother there. She's a very lucky woman to have you by her side.

Hopefully someone that is familiar with the center will chime in with better advice. I'm sorry I couldn't help out more. Please keep us informed.

Big Hugs to you and your mother,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Heidi


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Posted 02 January 2007 - 06:43 AM

Hi and welcome to the forums!

I am glad you found us and have posted a message, but sorry it is because your mother has scleroderma and she is now in the hospital. Wow, 20 years is a long time to have struggled with this disease. Do you know what caused the dehydration? Is it something to do with the sclerderma?

It looks like Janey gave you some great information. I think it is a great idea to look into a center that specializes in scleroderma for your mother. Please let us know what you find out and how your mother is doing.

Warm wishes,

#4 lclark



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Posted 02 January 2007 - 07:49 AM


Thank you for your quick response!

My mother was stable for the first 10 years. The past 6yrs my mom has been struggling with the Scleroderma. The reason she has been hospitalized is because she is so weak and underweight. She was not able to sleep for days!

We are in the process of trying to get her an appointment at Thomas Jefferson University Hospital, University of Pennsylvania, or John Hopkins in Maryland. Do you have a preference? I tried to get my mom to go to the University of Pittsburgh several years ago but she did not want to be poked and tested.

Thank you again for your reply!

#5 Sweet


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Posted 02 January 2007 - 09:47 AM

Hi and Welcome to the forums!

I'm really sorry your mother is so ill. I hope the link Janey gave you is the place you are taking her. This much be equally as hard on you as it is on her.

Please know we are here for you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)