Sticky Blood-Hughes Syndrome Support
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Word is spreading amongst the medical profession

I recently had to see a cardiologist about the results of a heart echo (good news for a change)

Asked what was causing me the most problem at the moment I mentioned pain but was struck by a comment from him recognising that Hughes can be the cause of pain- as well as diagnosed arthritis. Apart from a pain consultant, this is only the second time that I've heard recognition of Hughes as causing pain. (outside of St Thoms and Prof Hughes of course)


3 Replies

Hello, this is very good to hear, I have had the very opposite out in East Anglia and had to fight so hard for modern referral, which we now all have, so it is very pleasing and refreshing to hear about such and up to date attitude! Mary F x


Hi Tim

welcome n glad you found us. Got be positive as awareness spreads. Great news!!!!

Take care gentle hugs sheena xxxxxxx :-) :-) :-)


Very interesting! So glad for a doc that is knowledgeable!

I was diagnosed 2 months ago, I'm 48 and have lived with this all my life but didn't know what it was and I guess neither did any doc I ever saw. The closes we came was a high PRO BNP blood test I had after a change on my EKG. They swore I was in Heart Failure and insisted on a heart cath which was completely normal. Now that I have my diagnoses (after Achilles tendon surgery followed by DVT's and 2 pulmonary emboli), I find that a high Pro BNP indicates pulmonary emboli or at least pumonary problems. We were so close, but they didn't follow through.

I'm almost a month out from my second pulmonary embolus dx. and placement of the vena cava filter, but I still have such chest pain. I hope it eventually goes away and the breathlessness. I try not to complain, but this pain can sometimes be excrutiating. They say my heart is fine, and it is just mostly pleuritic pain, but I wonder.


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