exemption by virtue of potentially fatal condition

Aw Taffy! Will be thinking of you next week!

All the best,
Rachel x

Firstly best wishes with your op next week Taffy.
I understand the concerns many have over warfarin, it can be a very blunt instrument and carries all manner of issues with it. I've been on it over 30 years and though far from perfect, I'm sure it has kept me alive albeit there have been plenty of scares. I have, on Prof H's advice, a very narrow target INR (3.8-4.0) and self test at least every other day. (Finger tips are sore and bruised from pricks-have a job picking up a pen!!) I also have heparin injection available for when it drops too low. There are all manner of other considerations for those on warfarin but, for the moment, I think it is probably the best drug for my circumstances. I guess the point is that it is most definitely not a cure but can help many Hughes patients. The very fact that I have had multiple TIAs and some strokes whilst on warfarin must be evidence of the fact that it is not a completely effective treatment that keeps me stable.
On another matter, it's good to find a resource with such friendly helpful folk. Thanks all. Oddly enough I recognised Steve Donnison's name from the days when my brain worked and I worked as a CAB adviser. I did their IT as well and we were amongst the first to start using Steve's benefit programs which came in on floppy disks every so often. Good to see that he could keep up with all the benefit changes when many of us fell by the wayside utterly confused by it all

Taffy wrote:

I dont think you will find that APS allows you to claim exemption. Yes in its full blown capacity, you can have a fatal stroke but they argue that with the daily dose of plavix, warfarin or heparin, you will remain stable.
This isnt entirely true - I have pre Leaukemia - a Blasting of the Red cells in the Marrow,[ Jak2 gene] one side effect is CLOTS,, ive been hospitalised for many- having done the round of Calf, Lungs, then small Bowel[ caused removal] to the POINT- Ive been on warphrine for may yrs and still managed to gain a Clot with My INR in access of 2.5 ..Heparin was used in all my ops to stabalisze the Blood- and HERES the PUNCH line- on one Op ,the heperin TURNED toatlly against the Platlets , detroying them, leaving me to bleed to death on the Operating Table - it was touch and go for weeks after-

Want Im saying is what works in the Body today , will and can go AWOL as when it chooses... Im no longer able to take Morphine, tramadol, andy codiene based Drugs DUE to the same Problem - speaking of which Ive another op next week to remove more clots hanging from the Liver[ symptom of the Blood condition] - so those who believe in a Higher Diety- your prayers are welcome-

With all due respect i was not saying that this is entirely true as i know that people are affected to different degrees. However and i can only speak for myself when after one of my many pregnancy losses, i enquired whether this disease is not a controllable one, i was told in no uncertain terms that there will be options to control it, Now whether or not that sadly does or does not apply to everybody i still do not think it will fly with the authorities. An ex collegue was telling me the other day that he had had a guy in with his fourth bout of lymphoma and he had been turned down by ATOS!
So yes APS is horrible and yes in can kill us at any moment, although i do try to put that at the back of my mind. But as far as i can see it will not be on the exempt list until perhaps and this is a guess so dont quote me, enough of us do start dying from it. Not fair, no, but that is unfortunately the way it is.
And no i was not suggesting that the anticoags we are on prevent us from the dreadfull effects of this.

PPS Good luck with your op next week. Had three surgeries myself this year, so know how you must be feeling.
Callisto x