how to explain hughes syndrome to doctors

when i go into hospital or have to fill out forms about medical problems ,many of the doctor medical staff have never heard of hughes syndrome and to tell you the truth i dont know much about it myself i been told its a form of lupus . or that my blood clots n thats basically all ive been told .so can anyone tell me the best way to explain what hughes syndrome is to medical staff thanks shell

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  • Hi there my suggestion would be to have a couple of our best articles: I or we can help you select which ones. Get several copies made, and then present each medic with this alongside the forms, done this plenty of times myself. All the best Mary F x

  • hi mary if you could please help select articles that would help i would appreciate it .

    thankyou very much for the help xx

  • Here you go, and hopefully somebody will give you some pointers of who your nearest medical expert is in your area:

    telegraph.co.uk/health/4400...

    ncbi.nlm.nih.gov/sites/entr...

    ard.bmj.com/content/62/12/1...

    and you can always print out the front page of the Hughes Syndrome Foundation website, if they need more info...I have emailed every doctor/medical team involved with either myself or my children, this information.

    Mary F

  • another suggestion is research with your computer and arm yourself with this info-understand what you can - Mary is right on with her suggestion. we are here if you need some help with questions but i think the beter you understand the easier it will be when you talk to your doc's- see if you can find any other people close to your area that may have a doc. that is treating some people---------------------------- jet

  • We can send you some leaflets which might help - email me at kate.hindle@hughes-syndrome.org

  • that would be great thanks .

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