Wednesday, April 30, 2014

46: MAY is CIDP Awareness Month

A battle is won by him who is firmly resolved to win it.
Leo Tolstoy,  WAR AND PEACE

I am still in isolation, finishing up the final weeks of my own journey to a CIDP-free life, but want to bring these things to your attention today. Remember, CIDP is very rare, but you can insert any of the list I'll try to remember to finish up at bottom of post - they are less rare, and ALL do well with HSCT.

I'm cheating (energy choice, I'm running low) and am posting pretty much what I just put on my FB page for CIDP Awareness Month. If you have CIDP, you're aware of it every nano-second, believe me.

Invisible to many who look at you, it is debilitating for motor, sensory, and sometimes cranial and central nerve involvements.  Let's eradicate it along with all the Autoimmune Illnesses that are its cohorts and part of the same disease: AUTOIMMUNE ILLNESSES.

NOTE: We're so rare we didn't even make the following list (CIDP) and I know Lupus should also be on here, too - ah, there it is: Systemic Lupus. These are other manifestations or 'symptom' diseases of an overall immunological system failure:  Autoimmune Disease is the Proper Diagnosis, and these - well just the ways it manifests, often in clusters over time.  And Lymphoma and Leukemia are AD cancers (as are many others).  

Treating each separately diminishes the scope of what is now a true American Epidemic in Autoimmune Diseases. And it confuses the patient's care and delays getting to HSCT as even a thought process.  I know! 

I am not a medical expert.  

I am not an activist. 

I am someone who got GBS/CIDP and who hopes to help others find their way back to health. Nothing more, nothing less.  

Thank you for reading my blathering attempts at getting this vitally important information out there.  

And thank you all for your good wishes. I think "hope" and "prayer" are good things. I think ACTION is even better. My parents always taught me:  "God helps them that help themselves". YOU must decide your own path to health. I choose ACTION for my life!

That's a wrap. I've got a bit of napping to do and a book to read. 

A' bientot!

No comments:

Post a Comment