Personal Story

Karen Seex, PAS Scotland Support Group Coordinator

scotland PA
I was diagnosed with Pernicious Anaemia and iron deficiency in London in 2008, after months of feeling exhausted and simply not right in myself. Like so many of us, I left that appointment with a treatment plan but very little else. Injections every twelve weeks for life, and not much more by way of explanation. I had no real understanding of what PA was, what it meant for my health long term, or why my body had stopped doing something it should do naturally.
That experience of being left to figure things out alone is something I hear reflected back to me constantly by members of this group, and it is a big part of why the work we do together matters so much to me.

My own health journey has not been a simple one. Alongside PA and iron deficiency, I also manage polycystic kidney disease, chronic kidney disease, gastroparesis, and achalasia. It was only years after my diagnosis that I discovered there was a family history of PA, something that would have been useful to know at the time. Coordinating care across multiple conditions and multiple specialists means that self-advocacy is not optional, it is essential. Over the years I have had to become my own researcher, record keeper, and advocate simply to receive joined-up care. At one point, working abroad with no access to the NHS, I began self-administering my B12 injections out of necessity. What started as a practical solution became, in hindsight, one of the most empowering things I have done for my own health.

I joined PAS a few years ago and found, for the first time, a community that genuinely understood. Over time I became more actively involved, and when I learned that there was no one coordinating support for members in Scotland, I put my hand up. It felt like the obvious thing to do.

What I did not fully anticipate was how much the group would give back to me. Coordinating the PAS Scotland online sessions, supporting members through diagnosis, treatment battles, and the exhausting work of self-advocacy, has connected me with some of the most resilient and generous people I have ever encountered. We show up for each other in ways the system sometimes cannot.

more personal stories

Pin It on Pinterest

Share This