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 …
We might not phrase it this way, but we already know that our sense of touch provides critical information about our physical environment by transforming mechanical energy into electrical signals.”(1) When someone touches your hand, a set of signals is sent to your brain via 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 …
