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Hughes Syndrome APS Forum

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can anyone help please

Lesley_D profile image
3 Replies

Hi

I'm really sorry I haven't been around for a while, like many of us I've been struggling and with my diagnosis of AVN to both legs, and having undergone my first surgery I have been finding it really hard both emotionally and physically :-(

However I wonder if someone can help me, I know there is a letter of explanation to give to our family and friends.

Does anyone know where i could get a copy please?

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Lesley_D profile image
Lesley_D
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MaryF profile image
MaryFAdministrator

Hi there, nice to hear from you, hoping you are as well as you can be, and Happy New Year to you! I have found this - avncharity.org.uk/living-wi... They may be a good support for you and your family, perhaps they have some good fact sheets/leaflets and also an additional forum, although, please don't leave us.... MaryFx

Lesley_D profile image
Lesley_D in reply to MaryF

Thanks Mary, and no not leaving you're all too nice to leave :-)

x

Ozchick profile image
Ozchick

This 'Spoon theory' is great analogy! I can remember being on top of the world before I was diagnosed and thinking anyone lying down in the middle of the day was just plain lazy! Oh dear! It's come to haunt me. Today I used up nearly all my spoons when I tripped crossing the road and cracked a rib. I was alright until I got home (I think I used my adrenaline rush to get home) My Husband says he sometimes forgets when I look "so well," that some days are a struggle. I think I'll make a special spoon jar to leave in plain sight!

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