Reminding members of our rules and regs - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Reminding members of our rules and regs

MaryF profile image
MaryFAdministrator
42 Replies

Hi everybody, this is a forum which works for everybody, we as unpaid ADMINs give up our time freely to help others, most days of the week, unpaid. Unfortunately at times, like any other forum out there we get the odd troll, we try hard not to engage with them, as behind every troll is usually severe mental health problems and isolation, but nevertheless they wish to cause problems and misery for others. The HU platform is aware of this, and every suspicion is reported and monitored beyond HU itself. We don't like having to take posts down, however if people have become argumentative or aggressive or rude it leaves us with very little choice.

Please be aware that this forum works for everybody, we all help each other.

Please take a look at the guidelines, most of us know about how to behave on a forum.

healthunlocked.com/hughes-s...

MaryF

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MaryF profile image
MaryF
Administrator
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42 Replies
Manofmendip profile image
Manofmendip

I agree with my colleague, Mary.

Dave

daisyd profile image
daisyd

Thank you to all the administrators for all your hard work xx

MaryF profile image
MaryFAdministrator in reply to daisyd

Thank you, we do our best. MaryF

InSpain profile image
InSpain

I am not exagerating when I say I would not be alive today without the help, advice, support and encouragement that ALL the Admins offered to me when I was so very ill. THANK YOU ALL FROM THE BOTTOM OF MY HEART. I APPRECIATE ALL THE TIME, EFFORT AND ENERGY THAT YOU ALL DONATE TO MAKE THIS SITE AS SUCESSFUL AND INFORMATIVE AS IT IS. THANK YOU VERY MUCH ADMINS xxx

MaryF profile image
MaryFAdministrator in reply to InSpain

Thank you, we do our best, and like to do it, This forum is for everybody and will continue to be so. Thank you for your lovely comments. MaryF

mburns1401 profile image
mburns1401

I've often marveled at how generous you, Kirstin and all the other ADMINs are with your time and support. I can't imagine that you don't have the support and gratitude of every single person on this forum, including mine. Trolls need another place to spit their venom. There's no place or tolerance for it here.

MaryF profile image
MaryFAdministrator in reply to mburns1401

Thanks we just get on with it, this is how it should be, everybody works hard to make things work, thank you for your kind words. MaryF

lorac1 profile image
lorac1

Your help, support, advice and depth of knowledge is invaluable to those of is who do not know which way to turn. Thank you to you all.

MaryF profile image
MaryFAdministrator in reply to lorac1

It is our pleasure, thank you. MaryF

SheRidesAUnicorn profile image
SheRidesAUnicorn

I am incredibly grateful for the job you all do - sometimes APS can feel incredibly lonely and isolating and platforms like this where you can find others to identify and engage with are wonderful. Thank you, thank you, thank you!!!

MaryF profile image
MaryFAdministrator in reply to SheRidesAUnicorn

Thank you for your kind feedback. MaryF

CheddarAddict profile image
CheddarAddict

To all the regulars and admins on here ... Thank you, thank you, thank you......

You might get told all the time how much you have helped someone find their way along this path of naughty blood shenanigans and for me you have all, with the main web site, provided the information needed to help rationalise, realise and accept the long term consequences but more importantly make us all go 'phew, I am not alone!' and that is beautiful....

MaryF profile image
MaryFAdministrator in reply to CheddarAddict

Thank you, keep well. MaryF

suefessey profile image
suefessey

Thank-You to all admins.xx

MaryF profile image
MaryFAdministrator in reply to suefessey

Thank you, it is all of us that make this work. MaryF

Fusch profile image
Fusch

Thank you for running the forum, it's an invaluable source of information

MaryF profile image
MaryFAdministrator in reply to Fusch

Thank you. MaryF

Jillymo profile image
Jillymo

Without this site and the support of the knowledgeable admins I would not have had a diagnosis, so a big thank you to you all.

Your kindness and guidance to be seen at the lupus centre was of great help to me,

I would like to thank you all for your time and patients.

Rudeness is not called for, it just shows the ignorance of some people.

I feel we have enough trouble coping with our health and should not have to tolerate such people. I myself have not come across any animosity on the site in fact quite the opposite.

Fond regards to you all. xx

MaryF profile image
MaryFAdministrator in reply to Jillymo

Thank you, we try hard to accommodate everybody, even if previously their experience of a forum has been a bad one! MaryF

rlupus profile image
rlupus

Thank you for all your hard work i look at this site most days as its full of information, i would feel very alone with out .

keep up the excellent work.

MaryF profile image
MaryFAdministrator in reply to rlupus

Thank you, and keep well. MaryF

clairann2000 profile image
clairann2000

Unlike other forums, you Admins. weigh in and encourage everyone DAILY...it has to be a HUGE job and one for which we are all very very grateful rest assured. We probably don't thank you enough...so THANKS just in case we don't always say it.

MaryF profile image
MaryFAdministrator in reply to clairann2000

and..... thanks to you too! MaryF

jetjetjet profile image
jetjetjet

Not enough can be said for the work and dedication you all show and do.

I have been here for 5 years or better and you people as always are the core of this site .

it's just to bad of some bad apples spoiling the bunch .

Thank you all for all you do and always being there for us all :-) :-) :-)

Jet and Casey

MaryF profile image
MaryFAdministrator in reply to jetjetjet

Thank you for your kind words, keep well. MaryFx

jetjetjet profile image
jetjetjet in reply to MaryF

No need for "THANKS " all you administrators past and present are like Family as far as i am concerned . And i am sure I am not the only one on here with that outlook and opinion .

And anyone with discontent or bad concerns should be excited right out of the site until they can be respectful of you administrators , your advise , your comments and in fact every one on this site !!! :-)

You guys are the back bone and the nerve center of this group .. and I mean that whole heartily.

credit where it is due and reserved !!!!!

Casey and "JIM "

jetjetjet profile image
jetjetjet in reply to jetjetjet

OOPS DESERVED !!!! sorry brain cramps :-)

MaryF profile image
MaryFAdministrator in reply to jetjetjet

Best wishes to you. MaryF

Lure2 profile image
Lure2

I have also been here for more than 5 years to and through as Jet and Casey and I know very well that you are an excellent team and without you 3 this illness would not be known like it is.

Not to forget Professor Graham Hughes!

Love from Kerstin in Stockholm

MaryF profile image
MaryFAdministrator in reply to Lure2

Thank you, and cheers to you over in Sweden, we always appreciate your 'Swedish Eye' on things. MaryFx

jetjetjet profile image
jetjetjet in reply to Lure2

MY friend and Buddy from Sweden . Many of the past administrators such as Sheena -- Suz --- Pattie -- Kerstin --and i am sure i am missing some more . all have made this site what it is now . !!!

I agree, I was at my most helpless with this condition when I found this forum.

Thank you from me!

MaryF profile image
MaryFAdministrator in reply to

Thank you. MaryF

teresahunter profile image
teresahunter

Thanks to all of you for your hard work and time that you put in .

MaryF profile image
MaryFAdministrator in reply to teresahunter

Thank you very much. MaryF

jetjetjet profile image
jetjetjet

I have been threw so much with this disorder { 25 Dia. problems} most directly related to the APS .

27 pills a day to survive .

blood panels every 3 days { but never more than a week } to make sure i am not plummeting or sky rocketing out of site

since my Dia. in Sept 1 2009 all my problems , hospitalizations for site , balance , projectile vomiting , muscle spasms , 2 types of tremors. ETC

Finally in Nov. 2 2011 when i got Dc Chou did i start to get help and was found to be primary triple and over 120 tests done did things get under control.

they sum up all my Dia. as a " medically complex patient "

Threw all this -- " The mud the blood and the beer " sort of speaking all my emotional set backs --These people mentioned -and the entire group past and present have been my emotional and medical advisers.- warm hearts helping hands and the best advise .

with out them all i would most likely not be here now and the older ones here will remember all i have been threw with them !!!!!

My hat is off to all and my heart felt appreciation for them just being them from all over this planet ..

Thanks actually to you all

BIG HUGS from Casey amd I !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

sanderotter profile image
sanderotter

I don’t react very often, but you administrators all do a great job!

MaryF profile image
MaryFAdministrator in reply to sanderotter

Thank you. MaryF

CheddarAddict profile image
CheddarAddict

Loving the Love for the Admins

MaryF profile image
MaryFAdministrator in reply to CheddarAddict

Thank you, and every time I see you name, I feel hungry! MaryF

I am new to this forum and I think it’s amazing! I have learned more about APS in the last couple of weeks than the last 3 or 4 years since we discovered it in my blood tests. I also really enjoying reading the inspiring stories and messages people share on here. I’ve been having a lot of issues with depression and anxiety around my overall health during the past year, especially since becoming bedbound at Christmas and its so nice to speak to be able to relate to others. We all have our own histories and paths that have led us here and we all have our own cocktail of conditions but it’s just really nice to see that I’m not losing my mind, brain fog is very common and I have hope that I can perhaps find the right treatment and get control over my conditions and still find a way to become a mother (APS isn’t the only thing that stands in the way there but it’s certainly the scariest factor). Thank you to all the admins who maintain this site. It could very well be potentially life changing for me.

MaryF profile image
MaryFAdministrator in reply to Medically_confused

Thank you for the inspiring feedback, and may you continue to get better at your own pace. MaryF

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