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Hughes Syndrome APS Forum

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Attention all bloggers, contributors and readers.....

MaryF profile image
MaryFAdministrator
21 Replies

We are... only two members off 500 now, what a long way we have ALL come in such a short space of time! Mary F xx

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MaryF profile image
MaryF
Administrator
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21 Replies
jessielou profile image
jessielou

Hi Mary

Amazing, how far, only 6 mnths. I have gained so much. Pat on the back to all!! Gently!!!! :-) :-)

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

in reply to jessielou

*smile*

Tx

paddyandlin profile image
paddyandlin

It has been amazing ho this group has been able to take off well done all Party when we reach 500!!!

MaryF profile image
MaryFAdministrator in reply to paddyandlin

We just have!!!! MF x

paddyandlin profile image
paddyandlin in reply to MaryF

PARTY TIME YEAH!!!!!! WELCOME ALL 500 PEOPLE!!!!!

gingersmum profile image
gingersmum in reply to paddyandlin

Wonderful, congratulations for all your wonderful, informative, inspiring intelligent, and warm words, all who helped to make this wonderful facility possible, thank you xxx

Andrewl profile image
Andrewl in reply to paddyandlin

Well done for the idea, the set-up, and the organisation. I have found and continue to find the site a lifeline of credible realistic information shared by genuine people. CONGRATULATIONS!!!

janekins profile image
janekins

Hi

I joined about half an hour ago after finding your site!

Its always good to read about other people who have similar problems and i'm sure this site is going to be great for support!!!

MaryF profile image
MaryFAdministrator in reply to janekins

Hello and welcome, lots of support and lots of articles, and very informative, plus lots of people who understand exactly the sort of things you wish to know about! Regards MF x

paddyandlin profile image
paddyandlin in reply to janekins

Hi jane.

welcome and i hope you find the support and information you need.

paddy

jessielou profile image
jessielou

Hi Jane

welcome n glad you found us. Ask, moan rant whatever you need hon. We here and will help if we can.

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

Yeah 500 party is on. :-) :-) :-)

Tannyah profile image
Tannyah

This place is a great source of comfort to me when I feel syndromeful. When my brain goes fuzzy and I can't remember stuff, people tell me I'm just getting old, it happens to everyone. When my body aches they tell me I'm just getting old it happens to everyone! When I feel so tired I can barely move, people tell me to exercise!

This place has helped me feel not mental, like it's not all in my head, like I am only 30!!!

So thanks :) a lot

WayneL profile image
WayneL in reply to Tannyah

Hi, Tannyah.

I have witnessed this type of thing first hand and could not believe the types of responses that medical people have given to my adopted daughter. She has been put into a "psych"ward, been given asprin and sent home, and she has been told that ït's all in your head!".

I firmly believe that the best thing I can do, is be there to pick her up if she falls, be there to listen when she can talk, or just sit with her when she needs us,

Don't believe that you're alone in this because you definately are not.

We wish you well.

WayneL

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

This place is brilliant support knowing other people can relate exactly to how i feel after years of self doubt.

Storky profile image
Storky

Ditto to ALL of the above!! Congratulations and a BIG Thank you ;-)

taffydaffy profile image
taffydaffy

Well done I am the only person in 10,000 patients @ my surgery and I have always had to fend for myself but thank God for this site it keeps me sane you all deserve medals for all your hard work you do Thank You all for looking after us x

MaryF profile image
MaryFAdministrator in reply to taffydaffy

Thats nice, we all do our bit... I would prefer a large G & T to a medal though! M x

taffydaffy profile image
taffydaffy in reply to MaryF

lol would be hard to wear a G&T around your neck x

LesJames profile image
LesJames

Congratulations and well done.

It's nice to have somewhere to vent off and also find out very useful and pragmatic information from those who have experienced it!

nyctapdancer profile image
nyctapdancer

When I was diagnosed 15 years ago, the online APLS forum saved my life. you can bet i didn't have a doctor with a clue at the time, after a DVT and 3 PEs.

Now i have a wonderful and caring team and i have been very fortunate to be in good health 99% of the time.

Thank you all for sharing and caring.

MaryF profile image
MaryFAdministrator in reply to nyctapdancer

good to hear that M x

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