Monday, 27 January 2014

A trip to the doctor

This year is a year of action. So, to this end I've been to see my doctor (GP). We talked about three things.

Firstly, I've asked for a referral to the National Hospital so that I can talk about rates of progression, future medication and get some advice on stretches, exercises etc. I'll let you know what happens.

Secondly, I mentioned my recent bowel and bladder issues. We managed to rule out infection, prostate and muscle issues, leaving most likely to be an HSP symptom. I'll have another appointment about this.

Thirdly, we discussed my low mood of recent times. I've a number for a local NHS support service. I called and need to make an appointment here too.

So, in summary, not very interesting, but its my first experience of these, and I thought useful to note the process.

In other news, my first column appeared in the UK HSP support group newsletter today. Its based on my post some months ago on the paper about bladder issues in HSP patients.

Also, now we're into 2014 it's time to start analysing my survey results. I had about 120 responses, so that's brilliant. Thanks to everyone we who answered. Some interesting answers on the misdiagnosis question. I'm aiming to report on rare disease day (28th Feb).

Thursday, 9 January 2014

Rare disease patients outnumber cancer patients

I saw this blog post on the Nord website: which has an interesting point of view. I was a little surprised to find that rare disease patients outnumber cancer patients by about two to one. (this is a US number, and the comparisons in the blog post relate to the US cancer/rare disease population).

The stats for cancer in the US are here:, with various stats for rare diseases on the Nord blog. I suppose that this arises because this is a comparison with~7000 rare diseases and ~200 cancers.

I like the point of view presented here - essentially that doctors ought to be more aware of the potential for rare diseases, but I can also see the other side - to me it makes more sense for doctors to know the more common stuff inside out.