Sticky Blood-Hughes Syndrome Support

AARDA - Collaboration Of All Autoimmune Diseases

To those of you residing in the USA who thought there was not a lot of knowledge about APS I thought you may be interested and relieved to read about this Association and their obvious knowledge of the condition.

It would seem to me that their collaboration to get research into all Autoimmune Diseases is a huge step forward and something that is not happening anywhere else in the world where each disease is still treated very separately.

I hope you find this as interesting and helpful as I did as it seems an obvious way forward. I wish there was something along the same lines happening in England or Europe.

8 Replies

Good article, thanks!!!!


Yes, an interesting summary! Mary F x


Thanks interesting x


Thanks for the article. I have been a member of this group -- though come to think of it, I'm not sure my membership is current. I'll check. And the research is encouraging!

Now if the average doctor would just pry their minds open a little bit . . .

(Part of my story -- forgive me if you've read this before -- - yes, I'm a bit bitter -- my eye doctor on a routine check up thought I should have the cardiolipin antibody test. He did not run it himself as he did not wish to duplicate a test my GP may have already run. My GP tossed my note with the test name into the trash while saying "These young doctors straight out of medical school! They think they know so much" This was 2 years BEFORE my first stroke (though I had a history of DVTs.)



I've found, after over 20 years of illness, that it is not the illness which causes me stress but rather ignorant and callus doctors. When we spend our time, energy, hope in going to a doctor to be treated this way it can be devastating. Can you go to another eye doctor? I know it is not easy, starting over, whatever you need to do. Just know you are not alone and I'm sorry you also must deal with arrogant doctors who don't care and don't know. Don't give up and try not to internalize it too much - it is NOT you, it is them!




Thanks for this site, was not familiar with it. Very well done and have bookmarked it, a good resource and glad to know autoimmune research continues.


Leigh, just to clear up my confusing post -it was then eye doctor who suspected APS; it was my then GP who callously dismissed the eye doctors valid concerns. The eye doctor moved his practice to another city --I drive extra distance to see him. I feel hs the only doctor who is my real ally through this.

And you are right about doctors condescending disregard causing more stress then the disease itself!


thank you...I will be forever grateful to Dr. Andrea Gaito who diagnosed my 2.5 years ago


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