Getting To Know You
Posted 22 July 2007 - 03:35 AM
My name is Jane I am 43 and have been diagnosed with linear scleroderma en coup de sabre. I have been married to my beautiful husband for three years. Between us we have six kids one boy and five girls. We live in perth western australia, well I say that because that is where my husbands job is based, but we live in a caravan and go where ever work sends us, but only in western australia. so really our home is where ever our caravan is. We like it best when we are near the ocean as we are mad fishermen. we have a boat and like to be out on it as much as we can. Its not as nice when we go inland like we just did, we just came back from doing a job inland in southern cross (near kalgoorlie )for four months. At the moment we are in perth which is great as I have an appointment to see my dermatologist on the 10th of august so he can see how things are going and one of my daughters is also coming with me as we think she may also have the same as me but fingers crossed I so hope we are wrong. Im still trying to deal with this myself and get my head around it and still not really understanding it never mind having to try and explain it to my daughter when I dont understand it myself. But anyway hopefully I won't have too. If there is anyone out there who has the same disease or anyone who has some answers to all the questions in my head, feel free to contact me. So far the only symptons I have is two long dents on my head that go to my hair line. somedays they are both there, somedays theres just one dent, sometimes they feel flat as like they have gone and sometimes they are sooo deep. they can change many times through out the day. Anyway enough of this I only came on to introduce myself but got a bit carried away but it is nice talking to people that know what I have. It was really strange telling my local doctor what I have and he has no idea what I was talking about, so here I am the patient trying to explain to the doctor what I have, it seems weird. I wish everyone well and hope you have a good day.... ~Jane~
Posted 22 July 2007 - 11:19 AM
Welcome fellow aussie. You will find a wealth of information and support on this site. Often living here in Australia with scleroderma feels very isolated. I too have had to educate DR about the disease as many have not heard of it or know very little which at times is frustrating.
I hope people here are able to answer some questions
Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive
a little bent and broken and almost beyond repair!
Posted 22 July 2007 - 01:13 PM
Welcome to the Sclero Forums. Really really glad to have you join us. I have CREST, along with a few other diagnosis, but not what you have, so I can't give you any personal experience, I do hope someone else will chime in.
If you can think of any specific questions throw them out to us and we'll see how we can help.
Posted 22 July 2007 - 02:09 PM
I just wanted to welcome you to the forum. I am sorry I can't help because I have a different type of Scleroderma.
I bet it's beautiful where you live. I've always wanted to go there because it's so beautiful in the pictures and my best friend is from Byron Bay.
Hope you are having a fabulous weekend.
Posted 22 July 2007 - 06:33 PM
I am so glad that you joined us, but also sad to hear that it is because of linear Scleroderma. We have several members here from australia, so maybe they can direct you to a good rheumatologist.
Here is a link to the ISN. Its a story of a lady in australia with en coup de sabre.
Also, here is a link that might be interesting for you to read about en coup de sabre:
Your life sounds like fun ....and full of adventure. Thanks for sharing your story.
Posted 23 July 2007 - 11:23 AM
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