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khohu

My mom was just diagnosed with scleroderma.

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Hi, my mom was just diagnosed with scleroderma. 

 

The doctors have started her on mycophenolate mofetil (Cellcept).  She has had many problems for many years.  She has Raynaud's syndrome with her hands and problems with her colon and esophagus. 

 

I am just looking for any info I can get.  If you've had this type, how are you doing?  What are you taking?  Please any info.  Thank you!

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Hi Khohu,

 

Welcome to these forums!

 

I'm sorry to hear that your mother has been diagnosed with scleroderma and is suffering with so many unpleasant symptoms.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialised knowledge and expertise to deal with all it's little idiosyncrasies.

 

To give you some more information, I've also included a link to our medical pages on Raynaud's, Scleroderma Gastrointestinal Involvement and also mycophenolate mofetil (Cellcept) which I hope you'll find helpful and interesting and our Raynaud's pages do include many useful tips on coping with the disease..

 

Although I do suffer with Raynaud's, thankfully I don't have gastrointestinal involvement (and I'm hoping that pleasure will be indefinitely postponed :wink: ) so I'm unable to advise you from personal experience. However, I expect some of our other members will be able to give you some first hand help and advice.

 

Please do keep posting with any queries you may have and we'll do our best to help you.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you for replying. I'm reading to understand as much as possible. Looking back she started this 12 years ago with her hand and slowly other symptoms. Just hoping to see what others have gone through or what to expect. She has lots of great doctors.

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Hey Khohu welcome and shout out to your mum!

 

Scleroderma is a tailor made disease, every one gets a different version of it. I have diffuse systemic scleroderma and although there are a bunch of symptoms I could have, what I do have will be very different from someone else with the same variant.

 

My disease took 6 months to move my from my work desk to my couch and I never went back. I can't say things have got better, they've got a little bit worse every year since but I'm still here.

 

Your mum could already have been living with scleroderma for years so she's doing well and it's entirely possible that she'll continue to do so. I sure hope she does.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Khohu,

 

Welcome to Sclero Forums!  I'm glad that you've joined us to get more information for dealing with your mother's scleroderma.

 

As Jo and Amanda both mentioned, scleroderma affects everyone differently, and it's a very rare disease, so the most important thing is to see that your mother is being treated by a listed scleroderma expert, if at all possible. We have lists of them on our main site, for both the U.S. and around the world.

 

:hug-group:


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.

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