Sticky Blood-Hughes Syndrome Support
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automated records

I had to go to the ER today (I fainted and broke a rib and a toe). They have a computer system and just can check off boxes. Nowhere is APLS, Sticky Blood or Hughes. I had to go with a 'clotting problem'. They also did not have a place for the rare type of cancer I have. The receptionist did suggest I contact the hosp. on a weekday to 'help' them fix these problems (it has only been in service 2 weeks). Aside from the pain I am in, I felt very frustrated. Any ideas on what to tell the hosp.?

6 Replies

Tell them exactly what you told the nurse. Have them call the doctor you work with the most or your internal medicine doctor/rhemi doc. Don't ever let a doctor treat you until he is aware of your diagnosis. Some still don't know what's going on with Hughes. To me it's just crazy. I have helped my own doctor more on the APS signs and symptoms. At least she appreciates it. Good luck!


Thanks Tiger. I din't have a problem with the doctor; he actually knows me and my dxs. I was upset with the fact that they have these standard computer records without ALL the diognosis on them. And what about the little old lady that can't explain?? I am going to suggest that they put in a 'comment' section so if the pt. needs to add info, there is a place for it.


I think this is a good point to raise. I will certainly look into this in other places where I have the chance to offer an opinion on services in my regional area.

Thanks. Mary F


Oh dear I despare!

I hope you feel better soon x


Hi All

I went on the NHS Direct online and it had a fantastic write up on our illness I was quite Impressed but there is no excuse for this hope you get better soon x


I hope you are are on the mend soon hun,I find this so frustrating, there is a constant lack of knowledge of disorders in hospitals & doctors surgeries!!!

Yep I'm back on my soap box.....but it just gets me angry!!

I often feel like I'm taking one step forward & four back!!! even my local hos' I am having to get leaflets on Hughes taken in!!!! When will more knowledge be known about it? it should at least be on A+E comp' by now & leaflets in all hos' surely?!!

Oh I'll go & have a coffee...I'll be alright in a bit!! :)

I do hope you are not in too much pain & get well soon & at least they will try to sort it out which is good.....

Sue x


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