Monday, April 29, 2013

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


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 quite possible that when we find the cause of one, it could provide the master key for many.

“Snowflakes are one of nature’s most fragile things, 
but just look what they can do when they stick together.”
~Vista M. Kelly

(Click on the highlighted topics to access links provided)

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

May is also awareness month for all autoimmune disorders some can, and do in many cases, co-occur with some NEI disorders, a double whammy and a two-fold opportunity for the advocate  Autoimmune disorders to be considered for this particular blog (though there are many) include: 
Hashimoto’s thyroiditis,   rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS). 
Note: Multiple sclerosis is recognized in March, Sjögren’s and Spondylitis is April, and scleroderma in May.  There are some other conditions not listed here, because they have their own month for raising awareness, However, the still fall under one of these umbrellas. 

The rheumatic conditions that are included in May arthritis awareness are:  
  • Fibromyalgia, (here) 
  • Ehler’s Danlos Syndrome (EDS), (here)
  • Osteoporosis (OP), (here) 
  • Osteoarthritis (OA), (here)
  • Rheumatoid arthritis (RA), (here)  
  • Systemic lupus erythematosus (SLE), (here)  
  • Ankylosing spondylitis (AS), (here)  
  • Gout, (here)  

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

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 farther 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, if you are not able to use your own time and talent, and you are able to contribute financially, 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):
  • Elements of Advocacy (here)
  • Sample Advocacy Letter (here)

A few organizations you can support (Recognizing those that have been instrumental in supporting my advocacy work).
  • Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy (here)
  • National Fibromyalgia and Chronic Pain Association (here)
  • Missouri Regional Arthritis Centers (here)
  • The American Academy of Pain Management (here)
  • Pain Alliance to Implement a National Strategy (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 and hope, Celeste


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