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Hughes Syndrome APS Forum

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My website!

Suzypawz profile image
13 Replies

Just thought I would keep you updated with how well my website is getting viewed by people...& it is the Hughes section that is getting viewed the most!....which I feel is fantastic news :)

To date there has been 1,429 views since I started it 2010-2011. The last few months I have been doing all I can to put the info' out there......

In the last couple of months the chart has rose as shown by the image!! .......

At last the word is getting out there!!!

All 3 shopping centres we have in Burton are now advertising my posters for us, many people have taken my posters to put up where they can, doctors surgeries, chemists & the hospital in my area now have the Hughes leaflets/booklets displayed.

All I want is for people not to feel that they are imaging their symptoms & to ignore them....but to question the docs'.....could it be?......I dont want to make people paranoid, but I also dont want them to ignore possible symptoms of APS & then to pay the consequences later!!

In this day & age there shouldn't be so much ignorance from the medical profession, I don't want anyone else to hear: 'it's modern living', 'you're depressed' or 'it's all in the mind!'.....as I did & I know a lot of you did too!

I will always try my best to raise awarness & I think of all of you as my extended family :) hugs to you all, keep smiling xx

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Suzypawz profile image
Suzypawz
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13 Replies
MaryF profile image
MaryFAdministrator

Yes agreed, if you are changing your own geographical area, then we all can with the right prototypes, it is fantastic what you are doing! MF x

Suzypawz profile image
Suzypawz in reply to MaryF

Too true hun, if we all do our bit......it'll save me the leg work :) lol!!!

I will post them at all gigs etc...which means they will get to Wales & Scotland at some point! x

MaryF profile image
MaryFAdministrator in reply to Suzypawz

Great - keep going, would like to see a poster AND are you putting the standard Hughes leaflets out or new ones? As if so I will do the same as my paediatrician and also doctor getting interested! MF x I am also about to do some writing for a medical organization about my experience to date.. so this will come out with BELLS on etc M x

MaryF profile image
MaryFAdministrator in reply to MaryF

ps that chart looks like a diagram of one of my temper tantrums! x

Suzypawz profile image
Suzypawz in reply to MaryF

Lol Mary!!

They are the new leaflets & if you inbox me your email adress I could email you my poster which is a word document ....

Sue xx

paddyandlin profile image
paddyandlin in reply to Suzypawz

oh ohg can i have one as well miss PLEASE!!!!! and well done you doing brilliantly Ambassador lol

Suzypawz profile image
Suzypawz in reply to paddyandlin

Lol Paddy, yep help yourself with the posters with the link I left on the other post & further down here! :)

jetjetjet profile image
jetjetjet

Suzy - you are doing such a fantastic job , and to keep up this pace with the way you feel sometimes is just amazing. you are a true insperation . thank you for all you are doing :-) ------------------- jet

Suzypawz profile image
Suzypawz in reply to jetjetjet

Cheers bud :)

I hope you are ok today........& every day I wish really, keep your chin up & smile with me matey........:)

daisyd profile image
daisyd

Well done

~I have been thinking today, unusual for me, but if I had some posters and some leaflets I could take them to the hair dressers in my town, even if they couldn't put the poster up they would be aware of the syndrome. they may hear of someone who has a problem linked to Hughes and maybe point them in the right direction.

Could we have a hairdressers week where as many people as possible take leaflets to local Hair dressers that would help I think

Karen xx

Suzypawz profile image
Suzypawz in reply to daisyd

Good idea....why not try everywhere....I know Kate mentioned not having many of those leaflets left until when they have some more printed.....but you are welcome to my posters, not sure if this will work...but here's a link to the poster x......

s794.photobucket.com/albums...

paddyandlin profile image
paddyandlin

Karen,

Speak to Kate at the HSF charity she is more than willing to send leaflets to people to get more information out her email is info@hughes-syndrome.org

paddy

PS Hairdresser week sounds intresting lol

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

Funnily enough I was at the hairdressers Saturday and my hairdresser had never heard of Antiphospholipid syndrome.I'm looking forward to the day when everyone has heard of this condition and can relate to it.

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