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     In the summer of 1997, my mother was diagnosed with Lupus.  Since then, I've searched the internet for information.  I've discovered that Lupus is not a well-known disease among the general public, and those who are forced to dance with the "Wolf", as the Latin "lupus" is translated, are misunderstood by friends, family and co-workers.  
     Lupus is a mimic disease whose sufferers are often diagnosed with and suffer from a multitude of ailments before the Lupus is correctly diagnosed.  Symptoms range from mild to wholly debilitating, and the "lupie" will likely experience both extremes, much to the confusion of observers.  "But you look fine!" or "But you were fine yesterday!" or even "But you could barely move last time I saw you!" are common refrains to the lupus-sufferer.  People just don't understand how fast or slow symptoms appear and disappear or realize that the effects of the disease are not always visible.  
     My mom has to depend on chemical tests to tell her how she's actually doing and to determine her medicines and doseages.  Some days she's only in moderate pain, while other days she shuffles along in extreme pain.  Sometimes that shuffling has *invited* annoyed ridicule, not always hidden, from observers.  Mom says nothing.  Like many with Lupus, Mom is not a complainer and does not want to use the disease as an excuse even though it is usually the cause of whatever perceived behavior (really just a visible symptom of the internal physical ailment) is troubling her.  
     In late 1998 Mom's doctor decided she could stop taking prednisone!  But in late 1999, after my grandpa died of stomach cancer, Mom had to begin taking prednisone again.  She also appears to have Fibromyalgia--or at least enough pain to feel like she has Fibromyalgia.  Nevertheless, like many with Lupus who don't want the disease to *stop* them, she continues to volunteer at the local hospital and other places.
     I hope this page will be useful to others who are interested in Lupus for whatever reason.
The following are the links to Lupus related sites I've found or been directed to:

Asociacion Lupus Argentina --a Spanish-language site (gracias a Mari)

Autoimmune Diseases at CliniWeb 

Bem-vindo ao Lupus Brasil --a Portuguese-language site 

CNN Report on finding Lupus genes 

Connective Tissue Disorders at MedCheck--SLE 

Genetics of SLE Family Study 

German-language SLE site 

Health on the Net Foundation 

Korean Lupus Support Page 

Lupus Canada Home Page

Lupus Chronicle Newletter 

Lupus Erythematosus Page at Univ. of Washington, Seattle 

Lupus Forum, Dep't of Neurology, Massachusetts General Hospital   

Lupus Foundation of America, Inc. Main Page  

Lupus Home Page at Hamline University --this link is full of information about Lupus and tells how to join several Lupus    mailing lists.  

Lupus information  

Lupus prognosis article at Mayo Health  

Lupus Quick Reference  

Lupus SLE Resource  

Lupus Suncoast Chapter Page 

#lupus --DalNet Lupus Support Group and Clean Chat

Mayo Clinic Health Oasis Daily News 

Medicine Net Home Page 

Mining Company's (now About.com) Lupus Resources  

Moderated Lupus list at Acor.org  

On the Road--Stories of Lupus for a documentary  

Pathology of SLE at Univ. of Utah  

RxList--The Internet Drug Index  

SLE page at the National Jewish Medical and Research Center  

Systemic Lupus Erythematosus page at MedCheck  

Victorian Lupus Association Inc.--an Australian site  

WebDoctor's Lupus Page  

Welcome to the Lupus Letter Website  

What is Lupus?  
 

 

These are the homepages of other Lupies:

Barry's Lupus Home Page 

Carol Klarich's Home Page --with Lupus links

Cyndee's Lupus Home Page--Living With Lupus for 30 Years 

Embracing the Wolf 

Honeybee's Hive --with Lupus links

Joanne and Muffin's Homepage --with Lupus links

Ladysnow's Homepage 

Living With the Wolf 

Mick's UCTD and Autoimmune Page --with Lupus links

Nikki's Lupus Home Page  

Sara Cargill's Lupus Home Page 

 

This Lupus Awareness Ring site is owned by Rebecca Lambert

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Other Lupus information sites may freely add a link to this page:
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If you have a page you'd like added to the listings, please let me know.
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Created 7 July 1998.  
Last updated 16 May 2000 
 
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And look!  This page won an award on 14 May 1999 for being in the top 50 Lupus resources from Links2Go.

 
--The font for the links is Folio Lt BT, 12 pt. and for the headings Folio Md BT, 12 pt. 
--The wolf eyes photo comes from Papagei Studios
--I made the bordered background (my first one ever!) using Paint Shop Pro 5. If you want to borrow it, please give me credit!
--I got the Celtic MD Decorative font for the title from Kyl's Medieval and Fantasy Fonts