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Scleroderma life

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#1 Rondaamw



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Posted 04 November 2013 - 11:02 PM

My name is Ronda Marie Williams and I live in Texas. I'm currently 18 years old and a freshman at Texas Tech University. I have been struggling with scleroderma since I was 4 and a half. I have a scar going down my forehead but with three surgeries it's made a big difference but it's still there. Lately I've noticed that I have a new indention on my scalp and my hair has started to fall out. I'm hoping it will stop and I won't have to struggle with another scar. I don't know what the future holds, but I be thinking of the best. I've never met anyone with this same disease..

#2 Joelf


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Posted 04 November 2013 - 11:54 PM

Hi Ronda,


Welcome to these forums!


Sorry to hear that you've been dealing with Scleroderma for such a long time (I'm a comparative newcomer, having only been diagnosed for four years. ;) ) You've come to the right place for advice and support from people who're suffering with the same condition. :)


I've included a link to our medical page on Linear Scleroderma and  En Coup de Sabre and although thankfully I don't suffer with this myself, I've included links to a couple of earlier threads: 'En coup de Sabre' and 'En Coupe de Sabre and an Introduction'  which I hope you'll find helpful and informative. We do have other members who, I'm sure, will be able to give you some more first hand advice.


I've also included a link to our page on Scleroderma experts as we do recommend that if possible, our members consult a specialist.


Now that you've joined our community, please do keep posting and let us know how you're faring.


Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 06 November 2013 - 03:32 AM

Hello Rhonda


I am so sorry to hear you have had en coupe de sabre since the age of 4! I was 39 when diagnosed with systemic sclerosis and I that that too young!


It must be very disappointing to have symptoms reoccur and to know how it could turn out. Hair loss is so frustrating, mine has been coming out for few months, no bald spots thankfully but it's about half the thickness and I don't know why or when it will stop.


Wanting to meet another person with scleroderma was my passion when first diagnosed and now I host a group for people in my area, we meet 3 times a year and the support is invaluable. Have a look at the US support page although there are no groups meeting in Texas it gives some suggestions where you might be able to find others and of course if you were to start your own group we can offer you your very own page here on the ISN, subject to approval.


Take care and keep posting.

Amanda Thorpe
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