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I Thought I Would Share This!

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6 replies to this topic

#1 summer


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Posted 08 December 2007 - 06:35 PM

I went to see a general practitioner yesterday to get some perscriptions, as I was running out, my normal G.P wasn't there so I saw someone different.
I told him that I had Scleroderma and I needed some more meds, he said " what is this you are my fifth Scleroderma patient this year that I have seen. Since last year I had only read about Scleroderma.

I was quite surprised that he had come across a few Scleroderma patients. I just thought I would share this information with everyone.

Have a good day

#2 epasen


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Posted 09 December 2007 - 03:18 AM

It's really hard to imagine that there actually are others with sclero too, cause you never meet them. I'd love to meet a person at my age (or any age basicly) who's dealing with the same stuff that I am. But what a coincidence of yours there :D


#3 Margaret


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Posted 09 December 2007 - 04:00 AM

Hi Celia ,

I have found the same with Gareth. I thought it was such a rare disease but have met 3 others who have sclero, too.

I have always been meaning to ask you.....what is your picture?

Take care, Everyone.

#4 truman


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Posted 09 December 2007 - 10:42 AM

There was a recent article on this forum, that does change the statistics of Sclero patients and their numbers. I always felt there were many, many out there misdiagnosed and undiagnosed. My surgeon agreed this week when I stated too few doctors know of and know how to diagnose this disease.

It is what it is...........

#5 peanut


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Posted 09 December 2007 - 11:28 AM

There's a hand full of us who gather at my support group, 20-30 some from out lying areas but a handful live a few miles from me. I talk and meet with two ladies quite often.

I'm always shocked when I talk to "normal' people and they know what scleroderma is.


You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 bunny pomar

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Posted 09 December 2007 - 12:06 PM

The doctors that I see in Florida didn't know too much about the disease until they started treating me. Now they go out of their way to attend seminars and do their own research to learn as much about the disease and make sure any new treatments available. It's nice to know that they care so much and we're all learning together.


#7 debonair susie

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Posted 10 December 2007 - 05:35 AM

Bunny, you are so fortunate to have the kinds of doctors everyone would love to have :)

I also have those kinds of doctors and feel so fortunate. The rheumatologist I've had since she first got into practice in 1991 does research 1/2 of the week and sees patients the other 1/2. My "other" rheumatologist is so savvy, I'm in awe of his knowlege/intellignece. It's as though he can't learn enough. To date, there isn't anything he HASN'T been able to answer for me. As a matter of fact, while my hubby's ex-wife was in a coma, he took the time to explain her condition (TTP) to us. Because of all of the information he was feeding us, I was on "brain overload" :huh: and couldn't absorb it all!

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)