London PoTS Masterclass 2017
17th September 2017
PoTS UK in association with Dr Nick Gall were delighted to host the London PoTS Masterclass 2017. Almost 100 healthcare professionals attended to listen to both our UK specialists, and speakers from the USA, Canada, Sweden, Denmark, Finland and Germany. This would not have been possible with out the hard work of our fundraisers.
Dr Nick Gall presented an overview of PoTS and the way in which he manages it at Kings College Hospital. Dr Alan Hakim updated the audience about the new names and diagnostic criteria for hypermobile EDS and hypermobility spectrum disorder. Prof Qasim Aziz described the gastrointestinal complications of PoTS, which included altered gut contractions and ‘dumping syndrome’.
Dr Jane Simmons, a physiotherapist with interest in EDS and PoTS, spoke of her approach to rehabilitation of patients with PoTS and hypermobility. This was followed by a presentation by Professor Newton, who described the difference between tiredness and fatigue, and her approach to this disabling symptom in Newcastle.
Dr Cordery is an anaesthetist in London and gave an overview of anaesthetic considerations in PoTS, both for general surgery and in pregnancy. Main messages were to make the anaesthetist aware of your condition, medication, the need for plenty of fluids and to remain flat during the procedure.
Prof Nelson-Piercy reassured the audience that pregnancy in PoTS is safe for both mother and baby. She highlighted the medications that are considered safe and those to avoid when pregnant.
After lunch, Dr Phil Fischer described the N American experience of PoTS in teenagers and young children. He said it was rare before puberty, and in those who are 1st affected at a young age can be optimistic that it will significantly improve or disappear. However he warned that this may take a number of years. He emphasised the importance of exercise in the recovery process.
The research programme was introduced by Prof Newton, who highlighted area that patients feel are a priority for patients, following a surveys PoTS UK patient members. She spoke of
recent and ongoing attempts let by herself and PoTS UK to obtain funds for a national register of patients as a vehicle for future projects.
It was wonderful to welcome our Scandinavian colleagues who spoke about their clinical practices and approaches as well as developments in autoimmune science and therapies. We believe we will build on and strengthen these positive international links. Many thanks to Profs Fedorowski, Wallakat, Brinth and Partinen for traveling. We were very honoured that our Chair for the day was Prof Sheldon from Calgary Canada, who led the recent Heart Rhythm Society PoTS consensus document. He kept a very full schedule on time and facilitated fascinating discussions.
We have consent to share some of the power point presentations and videos of the talks
(which will be available soon).
Feedback from attendees was overwhelmingly positive and we have plenty of suggestions for further topics for our next large meeting, including mast cell activation syndrome, nutrition in PoTS…….
In the meantime we hope to keep the momentum by establishing working groups of interested and motivated clinicians to propel forward important agendas including access to services, research and getting PoTS on the medical curriculum. We will keep you updated of our progress.