This is the last call for anyone who wants to come along to our annual Patients' Day on Wednesday 14th May at St Thomas' Hospital, London. We already have over 100 people coming along so please do join us if you can

Hughes Syndrome - Get involved | APS | Attend our Patients' Day


ps I shall be there and looking forward to meeting anybody - MaryF x

22 Replies

  • Wish I could, I am in Ireland all that week.....Next year :-D

  • Shame, and yes I hope so next year, fun seeing you at the last one though! MaryF

  • Im winging my way back across the pond the day before...I will try and keep awake! You may need to give me a few nudges :-D

  • That has given me many ideas! MaryF

  • I'm coming! Looking forward to meeting you and hoping I will learn more about Hughes Syndrome

  • The event is always good, runs well and the information is great. MaryF

  • Are any of the talks/ events going to be live streamed? I have this little transportation problem in the form of the Atlantic Ocean. . .

  • Yes it is not as if you can buy a cheap day return! There will be transcripts available afterwards and possibly a film, not sure, I have just asked and will come back to you on that. MaryF

  • Ok.. what will be available Gina will be the transcripts and a professional recording... I shall alert you to it once it is available, as I shall need to purchase this myself for various people who would find it useful. MaryF

  • Now next year, if Fortune smiles on family finances, I plan to go hiking in The Lake District. Perhaps I can schedule a 2fer by adding Patients Day.

  • Well there is an option, as it is usually around the same date in the year. MaryF

  • Could not help reading. I am already crossing all my fingers. Lake District is that in Canada? I can understand you enjoy a hike after your hip-operation.

    Good-night here in Stockholm from Kerstin

  • Actually, Lake District is in Cumbria, England and is where the Romantic poets fell in love with the land which they made famous with their poetry. I've wanted to go hike there since I was a child.

  • Why did I put it in Canada? I will read about it and look at the map also.

    You are a lover of the nature. Must be wonderful to hike with other people you know and with the same interest.

    My great interest in Life is making paintings. I went to a Music-school here in Stockholm with singing and Music as a subject from age 8 to 20.

    We did not learn art in school so i did not know I could paint. I always took photos of the nature and also houses and people and lernt to see lines, shadows, coulours etc

    I painted so many pictures between 1988 and 2005 and had exhibitions and sold The pencils were "dancing". Then I could not see proper (APS). I have not started again and my left hand is hurting when writing with a pencil. I Think I have forgotten how to mix coulours. I will try with Aquarelle perhaps. Oil is more "heavy" I use to tell people to try to paint because you do not know that you can if you have never tried.

    Friendly. Kerstin

  • I hope you do not forget me over the Northsee .........Kerstin

  • Hi there, certainly not Kerstin.... I shall check back on here afterwards later on in the evening. All the best to you. MaryF

  • Thank you Mary! Kerstin

  • Hi Gina - her you go:


  • Hi Mary have not been to one before could you please tell me where about at st. Thomas' and what time it starts and finishes? Many thanks Tracey lou x

  • Here you are: It takes place in The Governors' Hall/St Thomas' - registration at 1.30pm for 2.00, and here is the programme:


  • Hi Mary, has i have said before, would have liked to attened, but I have other commitments. I hope the day goes very well, and best wishes to everyone. Bernie/Bernadette

  • It normally goes really well, best wishes to you also. MaryF

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