Patients' Day at St Thomas'

My first visit to St Thomas' today was so worth the drive up from Bristol. To be in the presence of the distinguished speakers Professors Hughes, Rahman, Regan, Hunt, Khamashta and Dr Somerville was interesting, enlightening and valuable to both myself and my daughter (she's my ears and memory bank).

It felt good to be able to hear from the horses mouth about the syndrome and the positive steps being taken on our behalf. I am thankful to you all for your knowledge, dedication and understanding of what we as patients go through on a daily basis.

I was also very pleased to meet and speak with other patients; the first time I have even met someone who suffers similar symptoms as myself. In particular I found another Bristol lady and having exchanged phone numbers intend to meet up to discuss the possibility of sharing awareness of APS in the area. Perhaps a Support Group for Bristol/South West? Who knows, it's early days.

Anyway, it's been a long day and I'm off to my bed.

Once again, my thanks to all those who made my trip to St T's so worthwhile.

31 Replies

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  • Goody, I think you summarize the general flavour and ditto x

  • glad everybody had a great time and it was a big success, only wish i could of made it but the swim might be a little much on my hip !!! its a super thing everyone was pleased -- congrats ---------------- jet

  • Glad you enjoyed it !!!

  • I will try and make more of an effort and get up there next time! Glad you enjoyed it.

  • Hello Shutah

    I wasn't able to get to St. Thomas' but I too live near Bristol, in Midsomer Norton, and I recently met a lady called Daniella, on this site, who lives in Shoscombe, about 4 miles from me. I would certainly be interested in forming a Bristol & South West Support Group and Daniella and I did touch on this subject over coffee.

    Keep in touch.

    Very best wishes.

    Dave

  • Hi Dave,

    I think it would be most helpful then if you, Daniella, my new contact from Wick near Bristol, and I all met up to discuss the potential of forming a Group. Are you and Daniella on FB so that I can send a private message to you with the intention of planning a convenient date for us all?

  • Daniella is AMAZING - a one woman awareness campaign! She has educated numerous GPs in the area and she has found an APS expert consultant in Bath. I do hope you can all get together and make a difference for others.

  • Are you able to let me have Daniella's contact details via my email address Kate so I can contact her please?

  • Hi Shutah

    I was on facebook but I found it a total pain, so I closed my profile. You can send me a private message on here and we can exchange details and arrange a meeting.

    Best wishes.

    Dave

  • Hi Shutah I am Daniella. Sorry I have not seen the messages. I'm really snowed under with construction happening in my house. Yes I'll be interested in setting up a group in the Bath and Bristol area. I also know of doctors in this area interested in APS.

    I've met with Dave and we thought about creating an awareness group.

    Lets meet this month over coffee and we can talk.

    I am on Facebook so you can also send me messages.

    Cheers

    Daniella

  • Brilliant, thanks Daniella. WIll be in touch :)

  • Really would have loved to attend but just still a little scared in these early stages of flying as I would have been coming from Dublin but will definately make it next year - is there anyone else on this site from Dublin or surrounding areas.

  • Thanks to everyone who attended and/or helped with the Patients' Day :) It was great to meet you all - some old faces, some new but all good.

    The day seemed to go really well and I think we should nominate Prof Anisur Rahman to present APS at the Christmas Lectures! How he explains something so complicated, so clearly is genius :)

    For those of you who couldn't come: I am wrestling with technology at the moment but the audio file should be available through our Facebook site soon (I hope - crash course in mp3!).

    There will be a typed transcript available shortly too - there will be a small fee if anyone wants to be sent this to cover the costs of photocopying and postage.

  • Glad it all went well Kate. Bet you're shattered now. Looking forward to hearing that audio. Well done again on getting the funding for that - shoud help to spread the word even wider.

  • there is a facebook site?

  • Oh yes - has been for several years - just search for Hughes Syndrome Foundation :)

  • oh yes please i was only thinking how handy that would be kathy xx

  • Am battling with it now - technology, tsk! Didn't know you were a gert lush too - I grew up in the west country - Wotton-under-Edge. No-one's ever heard of it - except Graham Hughes - he used to be a locum there in the 1960s. Small world ...

  • you are clever ;-) i wouldnt know where to start! WUE takes me back i had a friend who lived there so i spent lots of time back in the 90's when her children were small and i had rachel - such a small world to think Graham Hughes used to be a locum there too - wow he does not look that old to be working back in the 60's - very gracious man reminds me a bit of chris steele on the tv! ;-) & of course george cloney (just in case he reads this from time to time ;-)...

  • Wow - someone else who knows WUE!! Incredible :) I left for Brighton in 1992 but enjoyed growing up there in the 80s. LOL about the George Clooney bit ;) I'll let him know x

  • I know it Kate - I used to play badminton at Katherine Lady Berkeley School lol

  • No! I went to the Katharine Lady Berkeley School LOL indeed :)

    PS. Will PM Daniella's email.

  • Hi Everyone yes what a wonderful day and ditto to you shutah - it was gert lush meeting a fellow bristolian ;-) and how good will that be to have a south west support group ;-)

    i had to slip off earlier than i would have liked to catch tubes trains etc but it was lovely to see everyone i especially recognised mary f ;-) think pic on chest gave it away but didnt get chance to speak to you

    my hubby found it all very interesting i have taken his information (as wrote on the back of mine) to my gp practice this morning. The lovely nurse i see who takes my blood is going to photocopy it to put at both practices in the joint surgeries. (i mentioned on the page about the speakers the recruitment for Prof Regan's study should the gps wish to follow that up) i just want to shout from the roof top to raise awareness!!

    The good news from my unfortunate experience at my old surgery was i wrote to the practice manager just suggesting the surgery learnt more about the condition i had a very nice email back and have since learnt a neurologist have been to give a lecture / advice so that's made me happy.

    The nurse practitioner rang me re testing my own inr's just needing clarification on who will manage my dosages etc so i contacted Roche to gain as much info as i can as unable to chat to oliver yesterday and it seems as my ACL antibodies are currently high he suggest having a check first with a machine correlating against venous and feels i might not be suitable. I must admit being under two consultants one for and one against testing my own i wont jump in as would want both in agreement to support me. So i will put that on hold at the mo

    kathy xxx

  • Goody - I had a good snigger being given that as a present x

  • Yep was a great day to meet other Hughies.......resting now......off to bed me finks :) xx

  • Hi Kate,

    Is there any way you can get hold of the DVD through the post and how to go about it??

    Thanks Traceylouxxx

  • Hi Traceylou

    There won't be a DVD as it costs a lot of money to produce and I don't have any storage space - the BSSA told me they did a DVD one year and were left out of pocket and with a lot of stock - not a good situation for a small charity!

    You will be able to download and save the WMV file or you can have the typed transcript for a small fee.

    I am currently ploughing through the 400 odd photos to try and make a wmv slideshow from the MP3 file but have been besieged by requests and enquiries, meetings and journalists so am not sure when it will be available. Watch this space :)

  • I am still working on making a video out of what video I took with the images too.......& I have an idea for the future....I know someone that can do us a video next time with a quality recorder for a VERY reasonable price! x

  • Tracylou will speak to Kate and see what se says

    Paddy

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