As many of you know, I was diagnosed with Rheumatoid Arthritis by both my surgeon and rheumatologist nearly two years ago.  Treatment included steroids, chemotherapy drugs, juicing, and physical therapy.  I was a strong advocate for the Arthritis Foundation (which I continue to support) and even moved across the country so I could focus on my “return to wellness” instead of my exorbitant Manhattan rent.  Arthritis became my nemesis and I was determined to annihilate this genetic abnormality.  A surgeon, a Harvard-trained rheumatologist, and genetics had me convinced I had found the cause of my unrelenting and, at times, debilitating joint pain.  And they were wrong.

Whether or not my arthritis is RA, psoriatic, or osteo is still up for debate, but what I am 100% sure of is that the major cause of all of my GI, neuro, vascular, skin, joint, muscular, dental, and ocular issues is the result of a condition known as Ehlers-Danlos Syndrome.

While 1% of the population suffers from Rheumatoid Arthritis (which I may or may not have), EDS is extremely rare and goes unnoticed by most physicians.  My doctors viewed me as a hypochondriac because I was dealing with so many issues throughout my body, and they never considered the possibility that my symptoms could be related–the result of a single syndrome.  As many as, 0.0067% of the population suffers from Ehlers-Danlos and most have never heard of it.

So what does one do upon learning she was mistakenly diagnosed with RA and prescribed chemotherapy?  I lost patches of my hair, my freedom (I could not work), spent nights sleeping on the bathroom tile, and learned where each of my organs is located because of the pain.  Do I blame the doctors or praise them for trying to help me as best they could?  The arthritis that was removed on March 19, 2014 hardly helped my knee (it clicks each time I straighten it), and my surgeon will not release his surgical report.  My entire body’s general pain is worse than ever.  I do not remember what it feels like to not hurt…even admitting that hurts.  Despite the misdiagnosis and horrific treatments and procedure following the surgeries, I understand the doctors and surgeon were clearly attempting to reduce my pain.  Neither RA or EDS is curable: they both have controversial treatments and could possibly be related.  It will take a few more years to confirm the RA diagnosis is working in conjunction with the certain EDS…until then, I will trust my current rheumatologist and focus on Ehlers-Danlos.

All I can offer is my advice: keep getting second, third, fourth, and fifth opinions.  I will never trust a doctor based on his or her collegiate pedigree again.

***for more information on EDS, visit: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/