A b o u t U s
UK Potsies is a campaign and organisation dedicated to raising Postural Orthostatic Tachycardia Syndrome awareness in the UK (A member of Genetic Alliance UK). Following people from the UK living with PoTS – a form of Dysautonomia, to raise awareness and reach out to other sufferers of PoTS and Dysautonomia.
UK Potsies also provide an online haven for other PoTS sufferers – or anyone who may be closely affected – to come together for help, support and raising awareness. Together we are doing all we can to spread the word about this rare and chronic illness while helping sufferers at the same time.
Our motto: “PoTS – Life can still blossom!”
Marcia came up with the idea of a group named UK Potsies in February (2011). The first person she approached to join was Tara (Co-founder) as she was one of the only people she had met with PoTS. Tara was instantly enthusiastic and got on board the lovely Liz , who also does so much to contribute to various PoTS projects and the UK Potsies.
Later on Liam found us and joined the team giving a much valued and needed male perspective on living life with PoTS. Now we have the most wonderful group of people working in front of cameras and behind the scenes, each person doing a tremendous amount to contribute to this non-profit awareness organisation.
We are also dedicated to raising money for the Autonomic Charitable Trust. A fantastic charity which has a dual mission; to raise awareness of autonomic disorders (which remain under-recognised), and to advance clinical research into conditions affecting the autonomic nervous system. They intend to improve knowledge of autonomic conditions amongst GP’s and hospital staff. Steady progress is being made, but much more is needed if it is to help the many with often undiagnosed or mistreated conditions. The ACT much longer aim is to foster establishment of autonomic centres in major UK institutions, although this may take some time. The ACT has already given a £50,000 grant for research into autonomic disorders.
We have each been on our own little journey of ups and downs with PoTS and learned a great deal that we want to share with you, in the hopes that we can stand together as a united community to help patients and families and raise awareness at the same time. Our main aim is to be a friendly, happy group that offers emotional support and reaches out a friendly, helping hand to fellow PoTS sufferers across the UK- and the world.
For more help or information, speak to your doctors and specialists for medical support and advice. Please be aware that any advice provided here should not replace the knowledge or help of your medical professional, and should merely act as a reminder of possible things which may help.