Patient's Day - St Thomas' Hospital/May 14 - 2014

I have loaded this up from the Hughes Syndrome Foundation website, as I felt it was important that this is regularly posted on here. The tickets go quite quickly. APsnotFab (Lynn) and I will be there, and also TJ is planning to come along. I hope we get to meet some of you. The tickets go rather quickly, they can be purchased on line or via Kate Hindle at the charity: Also you can use the on line facility to buy them also.

Lynn and I have together managed to bring a lot of useful medical contacts along on the day, which will all help with the information sharing and networking to raise awareness of the disease.

I have attended three of these days so far, they have all been excellent and really worth attending in terms of the quality of talks and also the chance to meet other people. I will continue to post this every few days, as it is so important that information about it regularly appears for all our benefit.

I am sure after the event there will be some transcripts for those who want to be part of it, but can't come along!


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  • Yes as Mary says I will be coming and also bringing along a Headache Specialist Doctor as a guest. It is so very important that we network and information share with our condition so that we have specialist Doctors who can treat the individual aspects of the condition if necessary, which sometimes cant be controlled on the APS medications alone.

  • Mary thanks for tihis indeed i hope to be there.

  • Looking forward to meeting up. MaryF

  • Thanks for the link Mary. I downloaded the transcripts and hope to get my Doc to read it. Very helpful.

  • Yes I gave them to several people involved with myself and family also. MaryF

  • I would have liked to have attended, but I have other commitments. Prof Hughes did mention the date to me when I saw him earlier this month. Hope the day goes well for everyone. Bernadette ( Bernie )

  • Thanks, it normally goes well, MaryF

  • Sorry your other commitments clash it would have been great to see you, I am sure the transcripts afterwards will fill you in. MaryF

  • Thanks MF - you'll be pleased to know I managed to get £3K funding from Bristol Labs so we can get defo get funding for the transcript for all those that can't make it on the day. Thank you for giving your time up as a volunteer to help x

  • Good news! It is vital that people can benefit from this in the UK and across the world - money well spent! MaryF

  • Thank you Mary.

  • I look forward to hearing the outcome of the day. Best wishes.

  • Thanks Bernie - Graham mentioned that he'd like to interview you on stage as in a 'patient doctor consultation' he was really keen but I guess he didn't check with you?

    I'm seeing him first thing tomorrow so will let him know that you are already busy :)

  • Hi Kate he did mention it Kate. I was keen too. I did write to Graham last week to explain, as I also sent him other correspondence. Its a shame..

  • That is a shame, but you can't be in two places at once ... maybe next year instead?

  • Yes, lets hope so. Bernie.

  • Sorry Bernie but Prof Hughes told me that you were the best person to highlight sero negative patients because he'd diagnosed you, yet you had a lot of symptoms AND were very articulate! Apologies if our wires were crossed K

  • That's no problem. I do have a lot of the symptoms, and my cousin in Australia is Sero Positive. She was diagnosed about 2 year ago.

  • I am looking forward to getting copies of the materials- please let me know --- If my personal info is needed it can be gotten from Sheena or Suzy -- Thanks again for all your work you people put into things such as this . Jet :-)

  • Thanks Jet - it will all be available from the HSF website once it's been produced. A very nice person from this forum created a free PDF for us last year so I'm hoping they will do the same again :)

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