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AA - Our Own Personal Fight Against Terror

With some minimal apologies for likening what we face with the terror in the world, I can't help but make lots of pretty valid comparisons. Our battle with AA is so difficult because we can not fight it like we would a "normal enemy".  We have to find new and better ways to deal with these "cells" that are not behaving in a conventional manner.

If you have been following my story and others, you have seen that nothing seems to work for everyone and the side effects of some of the treatments are worse than the illness itself (spreading fear and uncertainty as to what to do and what is going to happen next).  I will never, ever forget the dreaded "serum sickness".  It was far worse than my original AA episode and it was caused by the very drugs that were supposed to be helping me (which, by the way, they never did).  It was like being exposed to Anthrax although admittedly not quite as deadly (although I sure as heck though I was dying at the time).

So, as we wage this battle against the terrorists in our body (autoimmune system gone haywire- kind of like a twisted religion maybe?), we must constantly be looking for alternative strategies and I encourage everyone who reads this to actively participate in the forum, do your own research and share it with others.  My complements to Marla Brown for standing up to abuse from others while trying alternative treatments and to Mindy and others who have held their ground with the cytoxan strategy which sure seems to have its merit.  

If there is one thing I have learned in my life, it is this:  Nobody (not even doctors) has all the right answers all the time!  We must constantly stretch the envelope to find a cure for AA and related autoimmune diseases.  And who better to help in the fight than the very people who are being impacted the most - the patients. 

I really believe we need these open discussions so that everyone can make their own well informed decision rather than blindly following fourth hand advice that is many years old .  I saw a posting from someone not too long ago, who said "it looks like the doctors have reached a point where they are just throwing up their hands and trying toxic drugs to battle a disease they don't understand" (roughly paraphrased).

Please continue on whatever course you have selected, but keep your eyes and ears open Share your research with others at the forum.  We will only win when everyone is fully  cured and we have eradicated this ugly disease from the planet.

And since I have gone this far, why not close with - We need to form a coalition to fight this battle against autoimmune disorders.  I see so many similarities in the various diseases (MDS, AA, ITP, TTP, Arthritis, Lupus, HIV, etc) yet very little information sharing is occurring.  If you have experiences with these other autoimmune related disorders that apply, please share them at the forum.  There are many valuable links to other sites with related illnesses.  I have become an active participant at the ITP site.

Thanks for listening and participating!

 

 

 

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