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Pregnancy and Scleroderma


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#1 charlie

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Posted 22 October 2009 - 03:39 AM

Hello all.

My name is Charlie, I'm 31 and I have had diffuse Scleroderma since I was 24 (diagnosed at 25) with Raynaud's, no organ involvement.

It has been some time since I have been on this site, according to my log 2007!! I have more questions about my illness and am struggling to find satisfactory answers on the websites. So I thought I'd log back on here and get my information from more trustworthy sources - the people who know best, the people with Scleroderma who deal with the issues that arise day in and day out.

At 31 I'm starting to think about a family. I would love some feedback from those who have gone through pregnancy with Scleroderma and to know how they have coped once they have a little one. I have contractures of the fingers and am petrified on how I would cope to even hold a new born.

Any input appreciated,
Many thanks
Charlie

#2 Jeannie McClelland

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Posted 22 October 2009 - 05:33 AM

Hi Charlie,

We've got a page on Pregnancy and Scleroderma which you might have read already.

Another good resource is Lisa Bullman, the Forums Assistant Manager. She's been having some computer problems, so I'm not sure when she'll read this. You can look at her previous posts on the subject by clicking on the 'Advanced' button up on the far right side of the purple tool bar - just to the right of the 'Search' button. That will take you to a screen where you can enter Pregnancy + Scleroderma in the 'Find Words' field and Lisa Bullman in the 'Author' field.

As far as hand issues go, an Occupational Therapist or Rehabilitation Therapist might be able to help you with ways to handle a baby safely. (My personal philosophy is that there is always a work around, you just have to find it. Posted Image)

Hope this helps!
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 Amanda Thorpe

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Posted 22 October 2009 - 11:28 AM

Hello Charlie

Welcome to the forum! It's always encouraging to here from someone who's had scleroderma for quite a time and still has no internal organ involvement!

I can't help with your query because although I have the sclerodactyly hands and immobile wrist I have no baby. Mind you I did, with hubby's help babysit a 7 month old recently. I managed to pick him up, feed him and rock him of to sleep. It was tricky but I didn't drop him! :emoticons-yes:

Seriously though I suspect you could find ways to adapt with limited hand function, if you think about it you have already adapted from having the full range of motion in your hands to having much less.

No doubt others will chime in who have actual experience of children and scleroderma.

Take care and keep posting.
Amanda Thorpe
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