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 …
Every now and then it strikes me that although medical science is advancing at a rapid pace, and these advancements are often being provided in hospitals fairly soon after their development (and approval for use), the same just can’t be said of advances in administration. Read More …
I’m in shock. I’ve just been told that I’m no longer an outpatient at the community hospital at which I’ve been treated since March. First for a Colles’ fracture (a distal radius fracture, or broken arm near the wrist), and then – once I was finally Read More …
