My right hand is more or less frozen into a claw-like position, due to a rare disease. This condition is Complex Regional Pain Syndrome (CRPS), although it still sometimes goes by it old name; Reflex Sympathetic Dystrophy (RSD). CRPS is primarily a neuro-inflammatory disease, but Read More …
One of my friends is terrified of snakes, so the title for this post is a warning – because it includes a photo of… a snake. It’s a harmless little garter snake, but still scary for some folks. Are you wondering why I’m posting a photo of Read More …
It’s been 6 months since I broke my arm (a snapped radius, or Colles’ fracture), triggering a rare disease which limits the use of my right hand and arm; from the fingertips to above the wrist. It also causes excruciating pain. And, of course, I’m Read More …
When I started searching for information about rare diseases, and connecting with others facing the same types of issues that I was, many people seemed to be referring to themselves ‘zebras’. This struck me as being a perfect word for us; a bunch – or Read More …
While reading about rare diseases over the past few weeks, I’ve noticed that they often involve some type of pain. Some of the descriptions I’ve read are: acute burning chronic debilitating pathological persistent throbbing and many other adjectives So I’ve wondered about the differences between Read More …
A few days ago, my rare disease patient journey took a strange turn. I was told that the hospital, at which I’d been treated for almost three months on an out-patient basis, couldn’t continue to treat me. Not because my disease was cured; I still have active Read More …
