Thought of the Day and on the wish li... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Thought of the Day and on the wish list too!

Lesley_D profile image
4 Replies

It is such a shame that time and time again we have to educate our doctors about our condition, rather than them thinking hmmm I have a patient with a condition I know little about I will research it in case they need my help and support - doh how easy would that make our life.

That's it folks - wish list updated

Smiles to all and hoping you're all welling and enjoying the summer

:-)

Lesley

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Lesley_D profile image
Lesley_D
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4 Replies
MaryF profile image
MaryFAdministrator

Yes I agree, and I hope it comes soon: Probably on our collective wish lists! Mary F x

InSpain profile image
InSpain

A nice wish Lesley :D

Lesley_D profile image
Lesley_D

I feel for you ApsnotFab - Mind you one comment you made, your GP will no longer prescribe your Heparin..... Mine never has, they say they are not allowed, so I have always had to go to my local coag hospital clinic, yet it is my GP that manages my INR and coag?!?! weird eh? I even had an argument getting a sharps bin ....

However, I have just put my first request into my GP for my Plaqeunil, as up to date I have got that from Guys - interestingly where I go for the APS clinic, and Tommies for my hematologist, weird to have different clinics....

Also as you say we have enough to fight for keeping well, without having to deal with aid to our GP clinics too.

AllyB68 profile image
AllyB68

I needed to share this - I went to our local walk in about an odd rash and the doctor asked if there were any underlying conditions - when I said APS - he was actually interested- asked how long it took to get diagnosed and how it affected me day to day- it was a refreshing change to have a doctor aware of the condition and be reassuring that my rash was unrelated.

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