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Posted by on Nov 6, 2017 in Bioethics, Privacy, Rare disease | 0 comments

Blog re-launch (06.11.2017)

Blog re-launch (06.11.2017)

I originally registered this URL – and started blogging about bioethics (also called medical ethics) – back in June 2007. At the time, no one in bioethics seemed to know what a blog was: “What’s a blob?”

With developments and research in genetics, and new uses of patients’ medical data/information, it seemed likely that privacy would take on greater importance in bioethics. For example, re-identification risks in using genetic information for data linkage and ‘big data’.

Patient privacy issues seemed so important – and overlooked – that I started studying for an international certification in privacy protection. I decided to also add a new section to my blog, to post about privacy in relation to bioethics.

Then the company hosting my blog closed down unexpectedly; I lost all the posts and the (few!) comments that had been made. This blog started before Cloud storage became available, so finding final versions of posts – over 10 years of blogging – meant searching through multiple USB keys, CDs, DVD, and computers. I’m still looking for old posts (and will post them as I find them, with their original dates), but wanted to re-launch the blog today…

Because today is “Colour the World Orange”, an awareness-raising day for a rare disease called Complex Regional Pain Syndrome (CRPS), often still referred to it by its former name; Reflex Sympathetic Dystrophy (RSD).

Just as I started searching for old blog posts in early 2016, my life was turned upside down. On March 3, 2016 I slipped on an icy surface and broke my arm (a Colles’ fracture of the radius, just above the wrist). About a week later I started experiencing some bizarre medical symptoms.

It took almost 3 months – and many, many visits to physicians and hospitals – before I was diagnosed with this rare disease on May 27, 2016. CRPS is a mostly invisible and chronic, but not terminal, disease. Soon after my diagnosis, I was seeking information – and connecting with others who were dealing with rare disease issues – on-line.

Many of the rare disease patients I’ve met in real life (IRL) and on-line (mostly “tweeps”, on Twitter) asked me to write about my patient experiences and about CRPS – in more depth than ‘tweets’. So there’s now a third section on this blog. In fact, over the past year or so, I’ve been writing more about CRPS than about either bioethics or privacy!

My sister Val very kindly re-registered the domain name/URL for me, found a blog host, and did all the set up for this new & improved blog site – Thanks Val! If you’re wondering why I chose orange as the colour scheme of my blog… well, that’s because orange is the colour of CRPS awareness-raising activities.

Whether you visit for bioethics, privacy, or rare disease information and views, I hope you enjoy the blog ‘-)

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