How do you explain APS to others?

[Wenz15]

Hi

I have trouble explain APS to people ... I think I end up confusing them and myself. Just wanting to know how you explain it to others?

Thanks

Wendy

[laserlight]

Hi Wendy

Our own website has some of the best and most concise info:

hughes-syndrome.org/about-h...

Keep on explaining and educating - it's so important. As well as explaining, you can print out a single page (or more if they're really keen to know!) and give it to them if you like.

All the best to you,

John

[Hidden]

Hi Wendy

Yes, that's a tough one and you are not alone in struggling with it. Due to the amount of people with the same problem, our charity has produced this Factsheet which you might find useful:

hughes-syndrome.org/resourc...

Hope it helps

[tim47]

Spoon theory can be helpful too. See butyoudontlooksick.com/wpre...

[SammyJ in reply to tim47]

WOW me and my husband both read this just, my husband was in tears bless him. I always say I'm a juggler but this was so amazing blew us both away I sure will refer people to this story, thanks Sam

[MaryF Administrator]

Hi there, I just explain it in a very simplified manner and then they normally go off and look it up! Our website is good, for them to peek at. Mary F x

[GinaD]

I say, " I very simplistic but not technically accurate explanation is ' I'm allergic to my own platelets.'"

[bluebutterfly101]

Hi Wendy, I just wrote a one page letter detailing how the condition affects me and how I feel on a day to day basis. Now when anybody asks I just hand them a copy. I know if they can be bothered to read it they will understand, if they don't then they didn't really want to know anyway and will probably not ask again.

Best wishes, Monica