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
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.
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
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 
Fantastic news well done one step forward as they say. You keep stepping forward.
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 .
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
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
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
Giant hugs. MaryF
Not good but hope it will go well for you.
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?
1 to 1.2-ATM sitting on 1.1 easier to keep stable on LMWH
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
New website case studies
Thank God for this website!
APS antibodies, non typical symptoms
