A BIG Thank you: I would like to say... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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A BIG Thank you

Stannington-lad profile image
6 Replies

I would like to say thank you for setting up the health Unlock web site as it has been great idea as it has helped me (and others) with reading others blogs and questions.

I would like to say thank you too for all the answers and support from other members on the site.

It has become an eye opener and read about problems that others face and I have learned quite a lot about APS and all the associate issues.

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Stannington-lad profile image
Stannington-lad
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6 Replies
MaryF profile image
MaryFAdministrator

Great news.... I must say I have got out a lot out of being an admin lady on here... the information from articles loaded up via the charity itself, and things submitted from members, and of course blogs and peer support,. Very useful to me and my extended family. Nice to hear such nice things. Mary Fx

Thanks Stannington-Lad :)

It's nice to know that this site is so helpful for people. It was Katie Burrell from Health Unlocked who contacted me last summer and, thanks to our fantastic moderators and members, it has developed and grown since then.

A massive thank you to Paddy and everyone who merged from APLSUK, our moderators: MaryF, Tascha and Jessie who make everything safe. And to everyone who uses the site and makes everything happen :)

Long may it continue and i hope we can use this site to have a voice for Hughes patients in the future.

jetjetjet profile image
jetjetjet

this site and the info i have brought forth to , all my docs,others such as nurses- rn-lna-np, and any and all curious people. get the message out of our problem , symtoms, aches,and pains associated with in our world. just got back from eye doc, told him of other blood disorders, gave him copies from dartmouth to investirgate . i think it kinda shocked him. he asked all these are on top of the aps . yes and the docs arent sure just where to go from here, i told him. he said if i go back on the plaqunil ,i have to be seen by him every 6 months, because of its effects on the eyes. i had to bring home my upgraded med sheet for his office, to much to put on one sheet, plus eyes dilated enough so seeing even now is tough. but good news still 20/20 vision [horray], he said i might start having glare problems, along with the occasional blurred vision i have been experenceing. i guess its better than the site loss like before, been lucky with that end of things. got alot of questions for rheumy [ doc chou ] i have to get ready for early weds morning at dartmouth. may be back on plaqenil, with lack of any thing else to use at this point. great job by all you people over in uk . my many thanks for your help, knowledge ,compasion, warmth and friend ship- --------------- jet

paddyandlin profile image
paddyandlin

It is nice to see that this site is doing what it set out to do which is to help APS patients and build a community to ensure that there is a clear message of suport and that we do not have overload for people as there are so many sites all saying diffrent things its nice to have a clear message

annie330 profile image
annie330

I do would like to add my thanks to all the people who got this site up and running and are keeping it going. It is really good to read people's blogs and questions and realised you're not alone.

Not sure if my husband is getting fed up of me continually telling him stuff, but I'm funding that I am learning so much and it is also helping to join the dots in my past medically history.

A huge thank you to all who give their time and to everyone who shares their experiences and offers help and support.

A great site I'm so glad I found it and that I'm a member.

Louise

jessielou profile image
jessielou

Hi

It is so nice to know that our site is providing the info and mutual support to all of us. I have gained so much insight into how to live through aps, smile through the bad days and laugh through the tears. There is always someone their when needed.

I know we've all felt like we banging our heads against a wall with docs that don't know and family/friends who don't understand. I know I've learned so much from my friendly fellow sludge bloods and taught my gp's practice and a rheumy nurse a thing or two. So thank you all too.

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

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