how to explain hughes syndrome to doctors

[shell64]

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

[MaryF Administrator]

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

[shell64 in reply to MaryF]

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

thankyou very much for the help xx

[MaryF Administrator in reply to shell64]

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

[jetjetjet]

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

[Hidden]

We can send you some leaflets which might help - email me at [e-mail]

[shell64 in reply to Hidden]

that would be great thanks .