A huge "THANK YOU" to all Admin and Bloggers from us here in Victoria , Australia!

On behalf of my daughter, Julia; and my wife and lastly, myself , I wish to extend to you all our gratitude and thanks for supplying such wonderful, accurate and insightful information that has led to us getting an appointment with Dr Tim Godfrey, whom we saw yesterday.

I have to say that it was such a relief to finally come into contact with someone over here who has some very relevant experience with Antiphospholipid syndrome.

Dr. Godfrey was excellent in his approach to our situation, extremely thorough in his examination and a real pleasure to meet.

He made us feel very welcome, made his explanations understandable to us all and treated both us, and our daughter with professional, nonjudgemental courtesy. A very pleasant exceptional experience.

This would not have occurred without the efforts of you all.

From our hearts to you,

Thank you so,so very much

Wayne L

19 Replies

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  • Great to hear you managed to get an appointment and thanks for the feedback. We have to rely on patients to let us know when they find a good specialist - it was down to some nice Aus patient who let me know about Tim Godfrey many years ago - so I'm sure they'll be pleased they helped so much.

    Good to know that he is still practicing and is the APS expert I was told he was :)

  • supper news our friend, great luck to you from here on out . jet

  • Glad you found e support you needed in the doc' mentioned, also happy you found the help & advice needed of here, take care & keep us posted on how you're getting on, Sue :)

  • I am so pleased to hear this - we are all this together regardless of location - and together we can all change things. I wish you and your wife all the very best and best wishes to your daughter also. I do hope the new care turns out to be everything you hoped for and better. Mary F

  • Hi Wayne

    so glad to hear your family had a positive appointment. Well done you for perseverence. Must be such a relief to be finally treated properly and with respect.

    Glad we all could help. Im so grateful for this site, we all help each other.

    Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

  • I am really happy for you wayne i am glad you funally have medical support and as everyone above has said you still have your online family to talk to.

    Paddy

  • Thanks to all,my daughter has had a complete array of blood tests, and we are to arrange an MRI for her at St Vincents Hospital, in Melbourne..

    Dr Godfrey has suggested that an overnight stay might be beneficial to complete the tests he has in mind.

    This has been such a helpful episode ,I just can't begin to tell you all what this has meant to Julia and us.

    It seems that the light is getting brighter as time goes on.

    I have hope that we can finally improve her condition and her daily life.

    As it is, she spends quite a deal of time in bed unable to cope with more than the essentials.

    I believe that with the right treatment regime, she'll be able to be active and have a life closer to the normal than she currently has.

    Once again, thank you all for the help.

    Wayne L

  • So pleased that you have had a positive outcome Wayne.

    Thanks for letting us know.

    Lets hope that Julia will soon be on the right medication ans feeling better than she does at present.

    Well done Kate for being on the button

    Sue

  • Good to know that someone has the knowledge and expertise in APS - I felt that over the years things were not being taken seriously and thankfully I have been referred to St T. I am now trying to be in control of my 'funny' heads etc and just learning to live with it. I have had it so long long and it is only having a great support network like Hughes that I have at long last began to understand this so I am really pleased that in Australia there is someone. I was told I could not visit my sister in Australia by my local hospital and said it was so risky etc etc but was told here in London, by consultant - "just go and have a good time" Hope your family will get the answers etc.

    Take care.

  • That's great news Wayne - hope at last!

    It was a lady called Kate Lee who gave me the name of Tim Godfrey - Kate has often talked about starting up a group/charity in Australia but things always seem to crop up. However, if you want to thank her personally her email address is: katy_lee@iinet.net.au. She has given me permission for other Australian patients to have her email address so I know she won't mind :)

  • Thanks, Kate.

    I'll drop her an e-mail as soon as I'm able.

    I'm actually a little snowed under this w/end but I'll do my best.

    Again, thanks.

  • Excellent news Wayne! A doctor who has heard of APS, is worth his weight in gold. One who is actually familiar with APS -- platinum. (How soon will I say "barrel of crude" instead of platinum?)

    Congrats!

  • A HUGE sighhhhhhh of relief for you all!! x

  • Hi, Lynn-FA,

    We're still coming to terms with the outcomes we've got from the appointment!

    What a relief it was to finally find someone who knew so much about it and may be able to help.

    I can't begin to tell you all how much less stressed I (and my wife !) are at the outcome.

    We're over the moon!

    And it's all made possible by you wonderful folk at this site, hence the title of this post.

    Wayne L

  • That is excellent news Wayne!

    Whereabouts is this doctor? Is that the fellow up in Sydney?

  • Hi, Tassie.

    Sorry it's been so long to reply, but was away fishing for the w/end with some mates.

    No, Dr Godfrey practices in and around Melbourne in a few clinics as well as his own in Malvern.(Melbourne, Suburb-Inner City)

    I can get you contact details, if you'd like.

    Thanks,

    Wayne L

  • Thanks Wayne that would be great. You can message me if you like

  • Hi Wayne

    Glad you found a doctor who is taking an interest in your daughter...good doctors who are interested and have good knowledge about APLS are very hard to find.

    Its taken me since 1999 to find someone who understands the roots of these frustrating conditions.

    For anyone living in New South Wales, Australia there is a fantastic man I see regularly for both Lupus and Antiphospholipid Syndrome called Dr Stephen Adelstein. He's based at Royal Prince Alfred Hospital in Sydney and he's the head of the immunology department. Without his help and that of Dr Robert Ogle (obstetrician) at the same hospital I would not have had my beautiful boys!.(now aged 3.5years and 9 months)...We have lost 3 babies (11 weeks, 16 weeks and 21 weeks) in the process...but I have no regrets persevering and looking for answers.

    All the very best for your daughter with all the tests.

    Linda

  • Hi,Linda.

    Glad to hear there is someone near you that can and does help.

    We have been very fortunate, indeed, to have experienced the same here in Victoria with Dr Tim Godfrey.

    Next week, we go for the MRI, then shortly after, back to see Dr Tim for the results.

    Will keep you all posted.

    Thanks,

    Wayne L

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