The MMP Patient Day at Moorfields Eye Hospital in London on 2nd October 2015 was a great success.
Around 20 patients were able to attend and participate and it was wonderful to have the opportunity to speak to others with similar (and also different) experiences and hear their stories and views.
There were a number of informative presentations in the morning. Not only did we hear a lot of news about recent developments in the treatment of the disease, but it was also reassuring to know that so many dedicated specialists were interested in and committed to improving the lot of patients.
Slides and video recordings will be available to provide more detail.
Professor Dart kicked off the meeting with a presentation about MMP, eye disease and Moorfields (UCL). He then went on to tell us about the research that they are hoping to progress, that shows very positive preliminary results in halting and even reversing scarring. If this can be developed, this will bring much hope to those with eye involvement in particular.
The second presenter, Dr Sajjad Ahmad from St Paul’s Eye Hospital at the Royal Liverpool University Hospital spoke about Rituximab. He positioned Rituximab in the hierarchy of treatment for MMP and told us that decisions about this had now been centralised and no further applications for its use were being accepted. Reasons for the decision have not been communicated well, but probably relate to the relative cost of the treatment with no good research evidence of its efficacy. The fact the drug is now off licence doesn’t help.
David Abraham, Professor of Cell and Molecular Biology at UCL and who has a particular interest in inflammation and scarring told us more about the research work being undertaken as well as the challenges for obtaining funding. Despite this challenge, the work and commitment of Prof Abraham and his team were very impressive.
One of our other favourite MMP Doctors, Jane Setterfield, reader and honorary consultant in dermatology in relation to oral disease at Guys and St Thomas’ Hospital the spoke about the implications of MMP on the mouth. Some of her suggestions are included in a set of guidelines on the British Society of Oral Medicine website. Amongst other things, she also mentioned probiotic mouthwashes –worth further investigation.
The final expert speaker was Dr Virginia Calder, of the UCL Institute of Ophthalmology another expert in the research and investigation of MMP and eye disease. She spoke about the examination of the process of the disease and the importance that animal research plays in our understanding of this.
After a good lunch and an opportunity to chat, we had 2 patient presentations, one from yours truly and one from Olav Ernstzen, a Barrister, MMP sufferer and also a great campaigner for people with impaired sight.
Then we had an opportunity to talk about the implications of the disease and what support would be helpful in the future.
There was far too much to talk about here, but the slides and the video recordings are well worth a look. Much more detail is available here – although video and the same information will be available soon on the NIHR/BRC website.https://www.dropbox.com/sh/gb8p6fybfp07m8v/AACTB1wKJVlyTX_tVYrjiPlEa?dl=0
Please refer to the media page to see a recording of the event
London 13th November 2014.
We were particularly pleased to be joined by Dr Jane Setterfield, reader and honorary consultant in dermatology in relation to oral disease at Guys and St Thomas’ Hospital. We had the benefit of Dr Setterfield’s enormous experience and understanding of Bullous disease and advice on its treatment, etc. Everyone had a chance to talk with her and get a lot of questions and concerns answered.
It’s always good to meet others who have faced similar challenges and this was a great opportunity to do this in a relaxed and informal environment.
Solihull – 13th March 2014.
As always, it was a very informal event. Everyone seemed to appreciate meeting up with old friends, making new friends and generally sharing thoughts, ideas, experiences and suggestions.
Simon also presented an engraved wine glass to Carolyn Blain, in thanks for her generosity, warmth and support over the years. Carolyn is stepping back from her role at the centre of the PEM Friends community, but I’m sure she will stay close to the heart of our community.
One or two ideas emerged from the conversations around the table, and we all agreed that:-
1) We need to take an active role in managing the medical response to our diseases and
2) There are some very good (and some not so good) professionals who have provided support over the years. It is worth sharing recommendations of those specialists who have been excellent in their knowledge and provision of treatment.
The next lunch will be in London later in the year.
Friday, 19 April 2013.
The Mucous Membrane Pemphigoid Open Day at Moorfields Hospital London, hosted by Professor John Dart on 19th April 2013 produced a significant amount of information on research, treatment and interventions.
The presentations included information about the various manifestations of MMP, on the skin, in the eyes, in the mouth, in the nose, throat and oesophagus and on the genitals. Some of the presentations were on the topic of research and developments, others on surgical treatment, and others on the background and diagnosis.
PEM Friends was invited to send delegates to this event, which was primarily aimed at Mucous Membrane Pemphigoid patients. Isobel Davies and Dorothy Raynard represented PEM Friends.
August 2011 – PEM Friends New Patron.
Carolyn Blain, who established and ran PEM Friends, has accepted our invitation to become our new Patron, in recognition of the work she has done in helping so many of us. She has raised awareness of pemphigus and pemphigoid, not just in the UK, and has been at the forefront of patient support. Carolyn is reassured that the “position” is entirely honorary!
The table below gives details of our past events and links to read more about the event
|Apr 2013||London||MMP Open Day at Moorfields|
|Nov 2011||London||PEM Friends Lunch|
|Jun 2010||Ashton-under-Lyne||Away Weekend|
|Jun 2009||Ashton-under-Lyne||Away Weekend|
|Jun 2008||Ashton-under-Lyne||Away Weekend|