Thursday, February 18, 2016

Wow! Updates to Addison's Owners Manual





Hi friends! I'm still alive and kicking!

I have so much exciting news to share with you, and I must share things one at a time. Here is today's gem.

I'm helping a friend prepare herself and family for her upcoming bilateral adrenalectomy (BLA) surgery in just six days. There is a lot of getting ready that must occur prior to ridding our bodies' of those pesky adrenal glands. 

The most comprehensive reading material I've found to help us sort out these details is the Addison's Disease Owners Manual, developed by a patient group in the U.K. Without a doubt, it is my go-to source for my questions post BLA (because I still haven't memorized it). Without hesitation, I share this resource with every Cushing's patient who must understand the complex process of replacing cortisol to stave off secondary adrenal insufficiency after pituitary surgery and primary adrenal insufficiency after removing both adrenal glands (BLA).

The indispensable document published in 2000 now has supplement pieces dated November 2015, addressing what the medical community and patients have shared in the last decade and a half. 

This is such good news that I'm writing this blog post at 3:00 am while lying flat on my back typing on my iPhone because I had to tell you about it right now, without delay!

Here is the link to see the original 2000 owners manual (officially called 
Living with Addison's disease  an owner's manual for individuals with the condition) and be sure not to miss the new 2015 documents that are now hyperlinked below that.


In the words of my dearest departed friend Kate, ONWARD.