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Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 12/31/2007 12:13 AM (GMT -6)   
Hi Bee,

I'm curious as to how you are so knowledgeable about lupus and lots of other stuff. Do you mind my asking what your sources are or what field you are in? Thanks so much.


SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Regular Member

Date Joined Oct 2005
Total Posts : 130
   Posted 1/5/2008 5:06 AM (GMT -6)   
Hello Emmi
I've been spending most of my spare time for the past ten years reading up and learning all I can about lupus to help people get the best care as soon as possible through support activities including online.
I have no special sources of on line information except for one specialist medical site that is paid full access. Apart from the various online resources, there are the books published by specialist lupus doctors, the newsletters of the various awareness and research organisations, asking my own doctors, my own experiences over many years and many doctors and occasionally talks and conferences, live or reported.
My information can only as be as accurate and up to date as the available resources and naturally is limited because I am a patient without clinical experience or specialist medical knowledge
My own understandings and interpretation might not always be right and in certain instances could be arguable; my memory can be faulty.  Sometimes it's necessarily over simplified by the demands of space and time. For example, it's not quite true to say that  a high ANA is diagnostic only of lupus, because it can indicate other CTD's, but it's accurate enough in the context of the question being answered.
There's quite a lot of controversy and differences of opinion among the specialists. The main aim is to give information that is a useful guideline based on reasonably accurate generally accepted ideas.
r Wallace lists  the well informed patient among the requisites for successful treatment.
Having medical qualifications doesn't necessarily mean being well informed about lupus and the needs of people with it, as too many of us know to our  bitter cost. Dr Walllace also says that patients have to look out for themselves.

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 1/6/2008 1:37 AM (GMT -6)   
Hi Bee,

thanks for taking the time for filling me in. Your ten years of researching lupus have really paid off in terms of knowledge. What is your understanding of when they say "patients have to look out for themselves? I'm sure you have personal as well as research experience. This is a topic that is important to all of us.

Hope you can be here often.


PS would also love to hear your story.
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditiis Raynauds, Sjogrens, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia fibromyalgia[

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