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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 kris52770

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Posted 22 August 2011 - 05:32 PM

Hi everyone,

It's been a while...I checked out to fight the good fight that we all seem to know so well.
I have kicked screamed and thrown fits :temper-tantrum: finally I am in with the sclero specialist. :emoticons-line-dance: My appointment is September 8th. I am not sure what is going to happen but at least I will know if I ever have this. Hopefully either way I may get some answers finally...11 months and counting with no definite answers just lots of symptoms and a positive skin biopsy. I will keep you posted and even though I do not post often. I think of you guys everyday.

Wishing you all the best,

:emoticons-group-hug:
Christine

#2 Shelley Ensz

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Posted 22 August 2011 - 09:49 PM

Hi Christine,

Thank you for letting us know that you finally have an appointment with a scleroderma expert. I'll cross my fingers and my toes, hoping that you find the evaluation beneficial and hopefully get some answers.

It is often "wait and see" for ages, you know. In fact it is an average of six years to diagnosis for women (and three for men with the same symptoms, ahem). That's even if you're an educated and responsible patient, and even if you're seeing great doctors, although of course the bad doctors do throw glue in the diagnostic engine.

Best wishes to you and let us know how it goes, okay?
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#3 Joelf

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Posted 23 August 2011 - 06:15 AM

Hi Christine,

I'm really pleased to hear that you've got your long awaited appointment with a Sclero specialist and I do hope that you'll get some answers to your questions.

I can see how frustrated you must be feeling; as Shelley has said it seems to be the norm that the diagnosis for Scleroderma and other autoimmune problems takes such a long time.

I shall be keeping my fingers crossed for you on 8th September and hope that you have a very productive consultation.

:emoticons-group-hug:

Jo Frowde
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#4 Lynnie

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Posted 23 August 2011 - 06:45 AM

Hey Christine

Well hurrah :emoticons-group-hug: that things are moving along, and I hope that the consultation goes well. Unfortunately as Shelley and Jo state "our wait and see" issues are the hardest part in getting the medical profession to realise that we are in trouble and find a way to get us sorted out. But once we are under the care of doctors that understand what we are and can help us with our issues it goes a long way to helping us to feel safe in their hands, but saying that, the early days with our diagnosis or the waiting for it to come is a long road. I've been diagnosed 4 years now and our battles continue; it's a case to never give up and be, as many have said, your own advocate; you know your body better than anyone!

I wish you well and let us know how you get on, okay.

Hugs
Lynn

#5 Amanda Thorpe

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Posted 25 August 2011 - 03:11 PM

Hello Christine

Well done on achieving this upcoming appointment.

Consider taking someone in with you and write your questions down so you remember to cover everything you want...and the consultation doesn't end until you do!

Take care.
Amanda Thorpe
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#6 Snowbird

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Posted 26 August 2011 - 05:49 PM

Congratulations Christine, so good to hear that you've finally got an appointment and it's a great step in the right direction for you! I hope you let us know how your appointment goes. Good luck with it!
Sending good wishes your way!