Sticky Blood-Hughes Syndrome Support

Update from Oz

Hi, all.

Sorry we have been out of contact for a while, but we have been busy getting tests done at St Vincent's Hospital in Melbourne, Victoria.

So far the results have been very promising, with the finding of lupus antibodies.

This means that we might get some better treatment for my daughter's numerous symptoms and make her life a bit more bearable than it's been lately.

It has been hinted that she might have traces of vascular disease and we are anxiously awaiting the outcome of the tests she has undergone.

She will return home next Tuesday, and we can't wait!

A big thank you to Dr Tim Godfrey and his team for all the care and effort they have shown my girl and also to the nursing staff at St Vincent's.

Also a BIG thank you to all of you here that have made this possible in the first place, because if not for the information and support given by you we would not have found Dr Godfrey in the first place.

Wayne L

10 Replies

This is great Wayne, so glad things are working good for you . congrat's---------- always good to hear news like this -------------------- jet


Hi Wayne,

So glad you're daughter getting the tests done and making progress towards correct treatment. Big moves to give her some life back. :-) :-)

Great news she be home soo too!! :-)

I am so pleased for you all, perseverance on your part my friend, give yourself a big pat on the back!!

Much love and big but gentle hugs to you all Sheena xxxxx :-) :-) :-)


very happy for you all ;-) hope you daughter is feeling better soon kathy xx


Hi Wayne I am very interested as one of mine has similar and now on the 'plaquenil'f for Lupus etc. Glad you have had some great care, keep us posted, it is truly remarkable to read about such progress.


Mary F x.


Great news Wayne! Keep us posted


Good news. Thanks for sharing. Good news regarding APS diagnosis and treatment is always welcome to hear!


Thanks everyone.

We have a specialists appointment on Thursday and will have results and possibly confirmation of tests then. Yay!

Looking forward to seeing Dr Godfrey for his diagnosis and treatment regime.

I'm sure that he will have some positive news and hopefully some more clues as to what we can do for her.

Thank you all

Will keep you posted..

Wayne L


Hi there I just joined up with the forum. I currently live in WA AUSTRALIA. I had a major stroke in my bowel several years ago and continue to regularly have new symptoms to add to the confirmed APS I was diagnosed with. I have the MOST fantastic team of 7 Specialists here in WA at St John of God, Subiaco, Perth. I am currently seeking new treatment from a neurologist as I have dreadful loss of short term memory. I am a text book case if I go by Hughes description of this Syndrome. So if you are still looking for help, let me know. Susie


That sounds very good. Welcome to this friendly site where we all try to help and learn from eachother.

Could I ask you what anticoagulation drug are you on and if it is warfarin, what therapeutic level?

Are you positive for one antibody or for all three or more? Perhaps you were diagnosed by the symptoms only?

Here we have found that the Neurologists do not understand this illness so well as an Hematologist or an Rheumatologist. When our blood is thinned enough we usually feel better if we have only APS.

Are you also diagnosed with Lupus or Sjögrens or Thyroid?

You told us that it was ok to ask so ......

I live in Stockholm and have all the antibodies in high levels and have been much better neurologically after warfarin around an INR of 3.5 or more. I am 70. I selftest and have good APS-doctors here.

Best wishes from Kerstin


I now see that you have answered a 3 year old post and I did not answer you but the person who put the question.

So please look at that old post and you have my question to you (answer) there .



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