Sunday, September 23, 2012

Lupus Symposium

I went to the Lupus Symposium  Sept. 22.  I am so glad I went.  I learn so much and was even empowered to speak to my doctor and even challenge her about being so quick to use prednesone and not using the new medication that just came out.  (Belimhmab)

I also learned Plaqunel the medication I am on that was also used to treat Agent Orange also has been used for 50 years for Lupus because there was nothing else other than prednesone and aspirin.

AND if you were diagnosed with Lupus 40 years ago you were told to go home take these meds and you might live 5 years!!!!! Wow!!!

Lupus is still a misunderstood disease and needs a lot more exposure and research to get a cure...the symptoms are so off the charts and different for every patient it is sometimes years before you are diagnosed correctly.

I believe I had it for years looking back over my symptoms before my Dr diagnosed it but I am so thankful she did and it only took 2 doctors not 4 or 5 like so many have to do.

They had  4 Drs that spoke 2 Rhemotologist , a cardiologist and a neurologist.  They each spoke for about 20 minutes on their aspects of lupus and how it effects the organs and then they gave us 1 hour to ask questions.  It was so inspiring to hear all these ladies from ages 8 yrs old to elderly have the same thoughts questions and concerns as me.  At the end there was a Patient Panel with several stories.  Very inspiring..

  • John 6:2 (NIV)
    and a great crowd of people followed him because they saw the signs he had performed by healing the sick.
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