May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

(Updated, December 11, 2017)

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

“You can’t change what you don’t acknowledge”

~ Dr Phil McGraw

Raising awareness is instrumental for research funding, improved treatments, and patient outcome.  How many times have we wished there were answers?

Is it purely coincidence that some of the NEI, rheumatic/arthritic and autoimmune disorders/diseases overlap? That is the $100,000 question.  Let’s make May the month of home runs for all neuro-endocrine-immune, arthritic and autoimmune disorders by recognizing all of them, coming together as one community. It is possible that when we find the cause of one, we find the master key to many.

WHAT IS NEI?

What is a neuro-endocrine-immune disorder/disease (NEI/NEID)? It is an umbrella term that takes in several invisible or orphan disorders. These disorders are thought to be affected by the neurological, endocrine, and/or immune system.  Conditions that are frequently thought of as NEI disorders are: myalgic encephalomyelitis/chronic fatigue syndrome (Now known as ME/CFS), fibromyalgia syndrome (FM), Gulf War Syndrome (GWS), multiple chemical sensitivity (MCS), and chronic Lyme’s Disease . 

AWARENESS

May is also awareness month for all autoimmune disorders that can, in many cases do, co-occur with  NEI disorders, a double whammy and a two-fold opportunity for advocacy.  Autoimmune disorders to be considered for this particular blog (though there are many) include: 

Hashimoto’s thyroiditis,   rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), scleroderma, and ankylosing spondylitis (AS). 

Note: Multiple sclerosis is recognized in March, Sjögren’s and Spondylitis is April, and other conditions not listed here that fall under the same umbrella. 

Rheumatic conditions for May awareness:  

• Fibromyalgia (here) 
• Ehler’s Danlos Syndrome (EDS) (here)
• Osteoporosis (OP)
• Osteoarthritis (OA) (here)
• Rheumatoid arthritis (RA) (here)  
• Systemic lupus erythematosus (SLE) (here)  
• Ankylosing spondylitis (AS) (here)  
• Gout  

Though allergy is not classified as an NEI, autoimmune or rheumatic condition, it often overlaps with several of the disorders above. May is allergy awareness month.

ADVOCATE

“Snowflakes are one of nature’s most fragile things, 

but just look what they can do when they stick together.”

~Vista M. Kelly

Raising awareness requires participation by patients.  We have a duty to help others understand how any one of these disorders affects our lives. As an advocate, I am never certain where or how my words will be heard, but I can assure you, they reach further than I ever thought possible.  I personally understand we can’t be all things to all people, and we must make difficult decisions when it comes to prioritizing, but when possible please find an organization that has helped you. Your support can make a difference for all of us. Here are a couple of links on how to advocate (click on the title):

• Advocate (here)
• Sample Advocacy Letter (here)

A few organizations you can support (Recognizing those that have been instrumental in supporting my advocacy work).

• National Fibromyalgia and Chronic Pain Association (here)
• Missouri Regional Arthritis Centers (here)
• The American Academy of Integrative Pain Management (here)
• Pain Alliance to Implement a National Strategy (here)
• The U.S. Pain Foundation (here)
• International Pain Foundation (here)

There are a plethora of organizations that are at your fingertips, make May the month you do a little something extra, even if it is learning a bit more about your illness. Self awareness is the first step. 

Standing together, standing strong, committed to making a difference.

 In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.