For those of you who don't follow the charity on Facebook or Twitter, here's the link to the BT.com article which has reached over 50,000 people so far.
Also, here's a link to the BBC Radio Oxford interview with Will Stammers yesterday - very good indeed! You will need to move the bar over to 2.11 as he was interview around 9.10ish.
Yes, it's legs are running now, and thanks for circulating and bringing medics to our Patients' Day Mary. BTW, James Lefanu has been in touch so hopefully we'll have something else in his Telegraph column
I really think Tracy Jallow's Patient Journey in the BMJ last month made a big difference to the medical profession too.
If anyone hasn't read it, the link is on our website but here it again just in case:
Yes it is all good work, and the effort put in by supporters helps in every direction, my partner can now spot people in his clinics with possibly either Hughes Syndrome, Thyroid conditions or both! MaryF
This is interesting. I only knew I had APS because I was diagnosed following clots as a complication of Ulcerative Colitis. Nobody (relatively speaking) has heard of UC, a few more have heard of crohns, but then nobody has heard of APS.
So for 4 yrs I "knew" I had APS, but nobody explained what that meant, beyond carrying on what had become normal for me - warfarin. Couldn't test for lupus etc as on warfarin.
I only heard of APS referred to as Hughes Syndrome about two months ago, so if the medical profession call is APS (which it is) and sufferers call it Hughes, then it's "colloquially" known as sticky blood, how is the general public supposed to get their heads around three different terms for one condition, even if it might affect more people than MS?
Also, some might say why should they? It is important to sufferers and important to know about it, but the issue seems to be the medical profession not necessarily linking Symptoms to APS, but then they would argue you can't run tests for everything (hence they are General Practitioners and not all specialists) and so some will remain undiagnosed. But that could be the same for a number of issues and ailments.
I would have thought that if you had presented with clots and seen a haematologist, they would/should know,but my 3 DVTs and 2 PEs were only run to APS tests AFTER they thought there was no reason for the clotting to be from UC (following a total collectomy, hence no more UC). So even with symptoms and evidence, it was the "last resort" to be tested for. Was that because one doctor/specialist knew of APS, was it just a chance result of broad testing or what, I'll never know.
Very good points CormorantWatcher - really the charity's main aim is to get routing testing when people present with acute symptoms. We finally have made headway with this, but it's a long old process!
I particularly like your comments on the name issue - if it's OK with you I think I will circulate with our trustees? It's not helpful to have too many flying around and APS is the only term the medical profession truly recognise - therefore, it would be more helpful to patients if we all said the same thing. This has been on the agenda before, but as awareness is now growing, it does need to be addressed.
No problem! I don't know whether my testing was after exhausting other options, because of increased awareness in staff or just lucky. Since moving three times since diagnosis of APS and six times since first clot, I have seen several NHS trusts and one foreign health provider (we lived in Germany for a while).
Again, hard to say if specialists are prevalent or a lucky pick, but since moving back to Bristol (where I grew up and pre-diagnosis) everything has moved much quicker and health professionals have asked me about my APS - when actually I knew very little, so it appears they know more here, now, than I have had told to me or known about in the last 5 years or so.
I just think that if I said to three different people I had APS/Hughes/Sticky Blood, they are all right and none of them would know what any of them were!
As for routine testing, I guess that is down to numbers - if you had an idea (or better proof) of how many might be suffering and so how much long term health costs could be reduced (not to mention traumatic occurrences), then the argument for routine testing would be higher, rather than only after suffering a traumatic symptom that only might point to APS. But then the NHS isn't in the business of screen testing for everything and even when I was under private health cover, it wasn't screened for, but that was 2004 and many moves ago!
Indeed - hard data is desperately needed. APS ACTION, Patients UK and ourselves have worked together to stick to the same estimates that were extrapolated from pivotal medical articles. However, they're still estimates ... but we have been talking to the health minister about a prevalence study, it's just getting it off the ground and the best way to approach it.
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My story so far - Migrating from Incapacity to ESA
Corby radio interview link !!!
National awareness
