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My mom was diagnosed with scleroderma

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#1 Francine



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Posted 23 April 2009 - 11:05 AM

First off I am really happy about this site it seems to have a lot of information. I am excited to get tip and advice for my mom

What should we expect...

She has had some of the symptoms for a long time
propitia (sp)

Symptoms last 3 years
High blood pressure
trouble swallowing
finger tips turn blue/white
can not be outside in high heat or cold

Last 18 months
and all the above

Does she have the advance stage of this disease. How do we make her comfortable

My grandmother has this too but has had it for years and my mom seems more sick.

#2 janey


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Posted 23 April 2009 - 01:24 PM


I hope you find your post. I moved you from the registration forum so more people would see your message.

I'm sorry to read all of the symptoms that your mother is experiencing. Is she seeing a rheumatologist or scleroderma specialist? What are her doctors doing to treat some of these symptoms? Many of them are treatable.

I am not a doctor and can only speak from experience and my research, so to be able to answer whether or not she is in the advanced stages of the disease would be difficult. This disease treats everyone so differently. Are any major organs affected like the lungs, heart or kidneys? I hope she has had them all checked.

I would advise you to make a list of all of her symptoms and complaints and take them to her next doctor visit. She should discuss them one by one with the doctor and see what can be done. For example, I use to have heartburn but Prevacid has eliminated it. Diet might be able to help with the constipation/diarrhea issues. With both of those, she really needs to be drinking lots of fluids. So please discuss each of these with a rheumatologist. She should also see a cardiologist if she's got palpitations.

I hope your mother does find some solutions so she'll feel more comfortable and have an improved quality of life. She's lucky she's got you there for her. Please keep us informed on how she is doing.

Big hugs to you both,
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 Shelley Ensz

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Posted 23 April 2009 - 01:34 PM

Dear Francine,

Welcome to Sclero Forums, we are very happy to have you here. Will you please give an extra hug to your mom, just from me?

I think Janey's advice is great, to discuss all the issues with her scleroderma expert. Also I'd recommend looking up each of her symptoms on our main site to see what treatments are available to help with them.

It's very important for you to get a lot of information about scleroderma as it will help your mother both medically and emotionally to have that sort of deep caring, as you are already showing by joining our forum.
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 Snowbird


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Posted 23 April 2009 - 02:35 PM

Hi Francine

I too am sorry to hear that your mom is having difficulties and your grandmother as well. I'm sure they must be happy to have you helping them and this is a great place to ask your questions as you've likely already discovered. I also agree that it's really important they have good specialists to help them manage their symptoms. Hope you keep us posted.
Sending good wishes your way!

#5 Sweet


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Posted 24 April 2009 - 04:02 AM

Hi Francine,

Welcome to the Forums! I'm really glad you've joined us. Sometime we just need a listening ear, sometimes advice, and sometimes just a friend. You'll find all of that here.

I'm really to hear about your mom. She's very blessed to have you so involved - my hat off to you!

I look forward to getting to know you/her better.

One day at a time my friend.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 Francine



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Posted 30 April 2009 - 01:16 PM

She does have an appointment next week with a rheumatologist, she has had her heart checked out in January she thought she was having a heart attack. They had her on a treadmill and really worked her heart out and the doctors said her heart was fine. She had a upper and lower GI Monday. They took biopsies of her upper and lower intestines we get results next week. She is taking protonic now for her acid reflux she said it helps a lot. She also has to see an eye specialist she may have beginning stages of glaucoma

I mentioned my grandmother has this disease also and I feel so bad because my mom is her main caregiver, Grandma is in her final stages her liver is shutting down and her leg ulcers really give her pain. So the stress of that is really doing a number on my mom but that's her mom and she would have it no other way. My mom says she wants to see what she may go through so we (her children) will know how to care for her.

Thanks so much for the replies and I will definitely check the site for more information and will keep everyone up to date.