Rare Disease Awareness Day 2018

February is Rare Disease Awareness Month with February 28th being Rare Disease Awareness Day. I have four rare diseases officially listed as rare diseases according to the National Organization for Rare Disorders (NORD) Complex Regional Pain Syndrome (CRPS) (listed under its older name Reflex Sympathetic Dystrophy Syndrome (RSDS)), Ehlers-Danlos Syndrome (hEDS), Generalized Acquired Torsion Dystonia (it’s still listed on my chart and I have it to some degree), but Stiff Person Syndrome (SPS) is my more fitting diagnosis. Of the four, I only consider SPS to be rare. The other three are underdiagnosed or misdiagnosed, but they will all make doctors turn their heads and be like “What’s that?”

No one should suffer for years, because doctors are unaware and unable to diagnose conditions that they do not know about. I’m 5.5 years into my battle with these conditions and the only disorder that has been treated effectively at some point was the CRPS. The other three I’ve either failed treatment for or my doctors have not adequately treated my yet. Over 5 years of unrelenting pain of every kind and muscle spasms causing severe contracture.

That’s where the education part comes in as a patient. It can be frustrating at times, but I know that only I know my body and its quirks best.

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