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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 LouiseH

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Posted 22 December 2009 - 01:22 PM

Hi to everyone,

I am very confused and was just looking for some answers from anyone who could help me really.

I have had scleroderma since 2001 and as I was quite young I never really wanted to know much about it at the time, then as I started getting worse symptoms I finally had to except there was something wrong with me and start to listen about treatments.

I never realised until I searched into this condition how many different types there are. I'm not even sure what mine is called.

A few of my symptoms are...

I get bad ulcers on my fingers in bad weather and they go blue in the cold (bad circulation). I also have a lung problem where I get breathless walking far or just can't breathe very well in cold weather. I also have a bad itchy throat that feels narrow and swallowing things are hard, if food is not easy to go down or anything that will make it itch badly I will just be sick and cannot keep it down. I lost a stone and a half through this problem last year, luckily for me this summer I started taking a new tablet at night and it has made the world of difference I can eat a lot more things again now and am putting some weight back on.

Sorry to rant on, just want you to understand a bit about me before I ask you about the reason for my post.

I am looking to start a family next year and have done a search on pregnancy and scleroderma, and as there are so many different types it was hard to understand what would apply to me.

Can anyone give me some advice to where I should look for this info.

Thanks very much for taking the time to read this, any replies will be much appreciated.

Thanks,

Louise

#2 Sweet

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Posted 22 December 2009 - 04:21 PM

Hi Louise,

Welcome to the Sclero Forums, I'm really glad you are here. You've come to the right place for information, support, and friendship, from people who know what you are going through.

I'm sorry for all of the symptoms you are having. It's hard to give you a direct answer, because we can all be so different. I wanted to ask you if you are seeing a Rheumatologist? If so, he/she should be able to let you know what type of scleroderma you have. If you are not seeing one, I highly recommend that you do.

Here is a link on different types of scleroderma that can help get you started.

I know we have several here on the board that have asked similar questions about pregnancy, and I'm sure you will hear from them soon.

Again, welcome, and keep posting so we can get to know you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 LouiseH

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Posted 23 December 2009 - 08:00 AM

Hi thanks for the reply,

I found out I have diffuse systemic sclerosis if that makes sence?

I do see a Rheumatologist every 8 weeks and he monitors me and my tablets etc.

I really would like to hear from anyone who has the same conditon as me and has had children, I would like to hear what their advice to me would be.

Many thanks.

#4 Amanda Thorpe

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Posted 24 December 2009 - 12:18 PM

Hello Louise

Welcome to the main forum! As you can see you have graduated from the new members forum!

There are many members here with scleroderma and children, hopefully they will chime in shortly. I have diffuse scleroderma but no children so I can't help with any advice other than to refer you to the information on this site about pregnancy and scleroderma.

Take care and keep posting.
Amanda Thorpe
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#5 eah

eah

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Posted 26 December 2009 - 05:37 PM

I have been diagnosed with sine scleroderma since 2002. I believe I have had symptoms since 1985. I have had three succesful pregrancies in the 1990's. I felt extremely well during all pregnancies. In fact, I felt better while pregnant than when I wasn't pregnant. All pregnancies were all 2-3 wks early. I did feel worse after all my pregnancies, but was able to function fine. Everyone is different, so I would consult with your rheumatologist and ob doctor. My symptoms did progress since that time, but I still work full time and I am able to take care of my kids. Good luck with whatever you and your doctors decide is best for you.
ANN