Prof Graham Hughes' latest blog book

Graham has asked me to let you know that his latest blog booklet has been published and you can now buy it from the charity's website: hughes-syndrome.org/get-inv... for £5 plus P&P.

It contains his Patient of the Month taken from the blogs from 2009-2012 - there is a useful index to the case studies for once, thanks to INOVA taking care of the publishing.

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  • I ordered a copy plus some other information and I handed his book, and the Patients' Day booklet, to my GP. I asked her did she know what Hughes Syndrome was and she said 'No'so I said it is what I have Antiphospholipid Syndrome, so she said she had never heard it called Hughes Syndrome before!!! She is the youngest GP in our practice and is new, I assumed that as she was dealing with the after effects of my TIA caused by antiphospholipid syndrome,that she would be well versed. All the GPs in our health centre know about antiphospholipid syndrome. I do not know if my Haematologist is listed in the list of knowledgeable APS specialist#s but I assume he must know because he wanted to present my case at some kind of conference this year, as an example of APS, I will ask his permission when I see him, in a couple of weeks, if he would like his name submitted but it might already be on the list.

  • Hi there - yes, medical people don't really use eponyms anymore so they will only know it as antiphospholipid syndrome. There is a movement in the US to remove ALL eponyms which seems a bit heavy handed for conditions such as Parkinsons, Downs syndrome etc but they are ploughing ahead!

    Can you please let me have the name of your haematologist so I can check whether he's on our charity's list, or if I need to write to him to ask if he'd like to be included. The more we can gather, the better it is for other patients.

    Thank you :)

  • He's not on your charity list but I will ask him, I can call his secretary tomorrow to ask him, I have already ordered another book to give to him,but it was my haematologist who printed off the front page of your website and told me to get support from the Hughes Syndrome

  • Well that bodes well if he's recommending our charity! Please let me have his details when it's convenient for you - I have a few more to write to so will do them en masse. Thanks for all your help with this :)

  • Dear Kate

    I was diagnosed in 2003 with lupus having tested positive. I attended the Louise Coote centre over 4 years. I had 5 lots of patch tests. Now, a doctor that doesn't know me (in neurology) says I do not have it, I have had 2 really bad bouts lasting 6 weeks, with swollen red face, eyes half shut, peeling skin, even the soles of my feet, terrible itching and soreness. I haven't been able to sleep with it. plus very itchy palms of my hands.Across my nose and brows it is always a brighter pink than the rest of my face, and I still get very itchy brows and eyelids (sometimes spotty)

    So what do I believe, would you know?

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