Non response from GHIC website? - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,414 members10,622 posts

Non response from GHIC website?

lloydyuk profile image
17 Replies

Hi

I recently received the newsletter from GHIC and it mentioned interest in becoming an Ambassador. I already do this for the stroke Association & APS Support U.K. I replied advising this and I was interested however I’ve had no reply? In addition I completed the online form that asked for patients stories. I responded as I’m a CAPS survivor, so thought it may be of interest. Again however I had no acknowledgement or reply? Is this normal as I think I responded a couple of weeks ago?

Thanks

Written by
lloydyuk profile image
lloydyuk
To view profiles and participate in discussions please or .
17 Replies
HollyHeski profile image
HollyHeskiAdministrator

@MaryF can you help?

MaryF profile image
MaryFAdministrator in reply toHollyHeski

Sorry for late reply, was away camping. MaryF

KellyInTexas profile image
KellyInTexasAdministrator

So sorry about this- I’m not at all involved on that side of things.

I didn’t even know Professor Hughes went live a few days ago on GHIC Facebook!

I knew it had been post poned, but did not know when it was to be rescheduled.

I’ve been behind the mark here and with all my reading because I’ve had some break through clotting issues. Micro and superficial, but it did hit the retina . I was sent to a specialist last week.

I hope someone gets with you soon.

I want to personally thank you for your efforts, and I’m certain I am not alone, including my fellow admins, everyone here on the forum, and the charity.

lloydyuk profile image
lloydyuk in reply toKellyInTexas

It’s no problem honestly. It was a follow up to an email about ambassadors & then I responded to the patient stories via the website. Hope your issues get resolved quickly too. Danny

Ozchick profile image
Ozchick in reply toKellyInTexas

Gruëzi Kelly-hope you get sorted out soon. I'm done with doctors for a while and back to walking again. (4km yesterday and only one short stop to catch my breath!) I've levelled out on a smaller dose of Clexane with anti factorXa stable and general feeling good. Happy 1st August tomorrow :)

LindaMorrell profile image
LindaMorrell in reply toOzchick

Fantastic news well done one step forward as they say. You keep stepping forward.

KellyInTexas profile image
KellyInTexasAdministrator in reply toOzchick

Grützi-

Der Rütlischwur . I have the 700Jahr Schweiz ( 1991) commutative plate signed / numbered… given as a gift from Ueli’s godparents.

We were building a William Tell hotel in Fredericksburg Texas… really a five star affair.

It’s not going through for a number a reasons… a shame really.

You would really enjoy having dinner with us to hear the city’s reasons why!

They told us it was too Swiss and not German enough.

We were going for classical architecture that could be found in Austria, Germany, or Switzerland any of the areas from the 17 th century to now really .

My private comments to amuse ourselves within the family were … well, quite funny .

Ozchick profile image
Ozchick in reply toKellyInTexas

Made me nearly spit my coffee out. Sounds a bit like an "Australian" restaurant we looked at in China! Too Swiss??? It sounds good but looks like I won't be eating there anytime soon :)

MaryF profile image
MaryFAdministrator in reply toKellyInTexas

It is unfortunate that a) our website went down for a few days and b) I was away camping with no internet and barely any phone reception, so I was not sent the Q&A in time. MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply toMaryF

Oh no!

Glad you are back in that land of technology.

I have a rituximab infusion again tomorrow- in San Antonio. I have to arrive at 7:30 ish and it 1:45 hours away ( traffic) and due rain…

We have had rain this summer in central Texas- surprise!

I will be drugged- so not on.

I’ve had a tough go of it this past week and a half after the past infusion- was July 19th I think- ( tomorrow will be two mondays ago.)

Lots of small clotting . Superficial veins again but long lengths

MaryF profile image
MaryFAdministrator in reply toKellyInTexas

Giant hugs. MaryF

Ozchick profile image
Ozchick in reply toKellyInTexas

Not good but hope it will go well for you.

KellyInTexas profile image
KellyInTexasAdministrator in reply toOzchick

Thank you- I’m just really please to hear about your positive strides moving forward. 4 km walk is really a lot of progress!

What number are you shooting re the afXa?

Ozchick profile image
Ozchick in reply toKellyInTexas

1 to 1.2-ATM sitting on 1.1 easier to keep stable on LMWH

MaryF profile image
MaryFAdministrator

Hello, I know that one of the trustees was in the process of writing to you, I will chase this up, your story will most certainly be of interest. Mary F

lloydyuk profile image
lloydyuk in reply toMaryF

Hiya, thanks very much for letting me know. Much appreciated. Danny

MaryF profile image
MaryFAdministrator in reply tolloydyuk

No problem, sorry for the delay. MaryF

Not what you're looking for?

You may also like...

GHIC Patient's Day - 9th December - online

We are delighted to announce that on Thursday 9th December from 10.15 a.m. – 16.00 p.m, the Graham...
MaryF profile image
Administrator

Covid Vaccination, Thrombosis and GHIC

Covid vaccination, thrombosis and GHIC Arvind Kaul Consultant Rheumatologist, St. George’s...
MaryF profile image
Administrator

APS antibodies, non typical symptoms

I just had the Cyrex Assay #5 done, which tests for most known autoimmune antibodies. I was...
drob32 profile image

via GHIC Social Media

A really useful illustration of the very low relative risk of thrombosis with the AstraZeneca covid...
MaryF profile image
Administrator

Query re Rivaroxiban

Hi I’m Marion. Been on here since June but only posted once or twice in reply to others. A couple...
marion4711 profile image

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
MaryF profile image
MaryFAdministrator
HollyHeski profile image
HollyHeskiAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.