Author Topic: Why don't people know?  (Read 7078 times)

jordozmom

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Re: Why don't people know?
« Reply #30 on: July 29, 2010, 08:43:10 AM »
I can't tell you how many times I've had to explain to health care professionals what Sjogrens is.  I usually have to spell it and spell plaquenil and I've repeatedly had to say that pilocarpine is generic for Salagen.  Sometimes when I've tried to explain to people that I have an autoimmune disease they ask me if it's like AIDS.  Geez louise, people.  GET INFORMED! 

I'm amazed any time I actually see Sjogrens in medical literature.  Sure, RA and Lupus and Scleroderma show up everywhere, but generally SJS seems to get left out.

I will admit, though, that it is becoming more common and more and more people are starting to know more about it. 
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

Patze

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Re: Why don't people know?
« Reply #31 on: July 29, 2010, 05:32:41 PM »
AIDS Jordozmom?  Someone actually wanted to know if it's like AIDS? :o ::)  How long did it take to pick up your mouth from the floor?


Patze

« Last Edit: July 29, 2010, 05:35:51 PM by Patze »
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jstroble

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Re: Why don't people know?
« Reply #32 on: July 29, 2010, 05:55:01 PM »
I've run into the same thing with Sjogren's and polymyositis.  I usually say they are a first cousin to lupus  or if my musles are refusing to work,  I say a first cousin to MS, another autoimmune disease that people seem to recognize.  A couple of my doctors had not heard of polymyositis. 

Guess we will go on explaining the rest of our lives which, hopefully, will be a long ti.  ;)

Joyce