Hello from New Zealand: Hi there... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hello from New Zealand

-jane- profile image
7 Replies

Hi there,

I am new to this site, however familiar with APS/ Hughes Syndrome, its symptoms and difficulty in management. Recently stephanie and i registered New Zealand Antiphospholipid Syndrome into a Charity, although we are still working out the bits and pieces it is hoped that this may be a start for support and information sharing / resourcing for patients, and also clinically - provide some leadership in terms of representation at the next conference in 2013. heres hoping anyway :)

For me personally I was diagnosed in 1999 in Auckland via symptoms on chorea. i then moved to Brisbane Australia and since then carried through in neurological difficulties epilepsy and pregnancy loss. I have now returned to Auckland to live.

Anyway good to find this site after being reccomended to join by Patrick. thanks.

I will have a little snoop through it and see what it is all about.

Cheers Jane

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7 Replies
jetjetjet profile image
jetjetjet

hi jane , sounds like your a lady on the move, welcome as i am sure you will find lots of interesting , info and symtoms on this site. god im in new hampshire u.s. you know we are practically neighbors. ha ha hope to hear more of you, jet

MaryF profile image
MaryFAdministrator

Hi there and welcome, hope you find the wealth of information on here helpful, lots of friendly people and a wealth of articles. Mary F

Suzypawz profile image
Suzypawz

Hi Jane, nice to have you join our 'family' of friends. :)

Wow you have travelled! I live in Staffordshire, England & hav'nt gone any further than Wales really!!

Hope you find extra useful info' on here & we get to know you more xx

paddyandlin profile image
paddyandlin

Hi Jane,

I am glad you decided to join the group and i hope that as your charity gets bigger we can all support each other on this forum.

If you need or want any info or question then please ask.

Paddy

daisy11 profile image
daisy11

It was good to see your question and it is good to know that there are alot of people in the big wide world with the same problems. This site has been so helpful, because at first you think you are the only person suffering from these things. The questions are very much like mine and so you can get info which may be so beneficial to us.

Take care

Hello again Jane :)

Great to have you on board here and, as I mentioned earlier, if our HSF charity can help your new one just let me know. You'll have so much to do at the moment, it will probably take a while before you can really get going.

Liking your Facebook page - I emailed all our Australian/NZ members to let them know about it and will also point them to your charity when the website is up and running.

Good luck with everything

Kate

jessielou profile image
jessielou

Hi Jane

welcome and glad you found us.

Ive been offline for a while so had not read your blog.

I hope your new charity goes well and we are here for support too.

hope you are well today

Take care gentle hugs sheena xxxxxx :-) :-) :-)

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Congratulations to Professor Hughes for creating this excellent Charity GHIC and support network. It