Raising Dysautonomia Awareness
Building a community of experts working together to increase understanding of Dysautonomia -and what can be done to treat it.
What Is Dysautonomia?
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Dysautonomia is an umbrella term for conditions where the Autonomic Nervous system (ANS) doesn’t function in healthy balance.
The ANS is the automatic control system for your body — regulating heart rate, blood pressure, digestion, temperature, breathing, pupil size, even sweating. When it misfires, due to insults like viral infection, shock, trauma (psychological and physical) everyday things like standing up, eating, or exercising can trigger in some people severe symptoms: dizziness, fainting, rapid heart rate, fatigue, gut issues, and temperature swings, extreme fatigue plus a whole host of other symptoms.
Since the 2020 Covid19 pandemic it is estimated that 1.9million people in the Uk alone are suffering from 'Long Covid' - could exploring this condition through the lens of Dysautonomia help us find a way through the maze and offer real help?
Our Mission
We started Dysautonomia Matters to gather an interested and passionate team of people together working in all aspects of health care, to promote deeper understanding of Dysautonomia. There are many voices working to promote understanding in this area including all the global POTS charities alongside Dysautonomia International, the Dysautonomia Project to name just a few.
Getting this condition recognised is not an easy task so we want to add our voices to this global effort. Together we will explore the multi-faceted approach that can help patients suffering from this condition, return to the lives they want to live.
Our goal is to see secondary and idiopathic Dysautonomia explored on the medical school curriculum, especially in GP training, and to provide further professional development opportunities for any patient facing health care provider.
This project is led by Suzy Bolt, patient advocate, founder of the Rest, Repair, Recover programme.
Who Are We?
Led by Suzy Bolt, the founder of the Rest, Repair Recover (RRR) programme (an online programme dedicated to the healthy function of the Autonomic Nervous system), we are a growing group of health care professionals committed to raising the awareness of the hugely common but often unrecognised condition of Dysautonomia.
Suzy established the RRR programme in 2020 after becoming very unwell with Dysautonomia following a Covid 19 infection.
Dysautonomia affects around 70 million people worldwide, with numbers growing daily since the covid 19 pandemic. It’s currently a condition that only specialists can diagnose, and is very difficult to test for. This leaves patients feeling abandoned or hopeless and Doctors at a loss as to how to help. Suzy and the growing team of healthcare professionals she works with are adding their voices to the 'call to action' for education, research and recognition of this condition.
Dr Boon Lim is a Consultant Cardiologist and clinical electrophysiologist at Imperial College Healthcare NHS Trust, based at Hammersmith Hospital.
He is the Clinical Lead for the Imperial Syncope Diagnostic Unit, a tertiary center performing tilt testing to diagnose and manage dysautonomia.
Dr. Clare Rayner is a Consultant Occupational Physician, educator and patient advocate.
She has led on education and publications on COVID and work since 2020, including WHO Long COVID Living Guidelines. She received the 2023 Society of Occupational Medicine Award for the Development of Occupational Health Globally due to her COVID-related work.
From 2020 she has worked with Autonomic Medicine specialists to develop appropriate testing protocols for the many people affected and is keen to increase awareness and expertise on Autonomic Dysfunction amongst health professionals.
Professor Deepak Ravindran is a leading expert in pain medicine and Longcovid, with over 20 years of experience treating complex conditions in both NHS and private practice.
He had helped set up and lead the Berkshire Longcovid Integrated Service (BLIS) from 2020-2024 and conducted research as well with Longcovid patients. He specialises in multidisciplinary approaches to management/treatment—particularly for patients with Longcovid where dysautonomia is a common and challenging problem.
Dysautonomia, involving dysfunction of the autonomic nervous system, often complicates daily living for these individuals. Proper validation, recognition, assessment and ongoing support are all critical and Prof Ravindran will share his experience of managing this condition in his clinic.
Carolyn Forsyth qualified in medicine in 2003. She went on to work in various specialities primarily emergency medicine and general practice for NHS Highland.
She also spent three years in the private occupational health industry.
She is now a freelance doctor specialising in post viral and Long Covid care after experiencing the lack of knowledge and support in this area following an extended illness herself.