Hi Michael,
Thank you for your warm welcome. I appreciate the questions too. So if I may add some context before I answer specifically. We are effectively empowering individuals with disabilities with a preventative tool to avoid adverse cardiovascular events commonly associated with their condition. At the risk of a long post but hopefully to clarify here are our top disabilities with such associations;
Neurodevelopmental Disorders
Down syndrome:
congenital heart defects and increased risk for cardiovascular disease including impacts on the Autonomic Nervous System, while medications side effects also create higher risk.
Autism Spectrum Disorder (ASD): Increased risk of cardiovascular issues due to factors like stress, anxiety, and potential side effects of medications
Attention Deficit Hyperactivity Disorder (ADHD): Medications commonly used to treat ADHD, such as stimulants, can affect heart rate and blood pressure, impacting cardiovascular health
Physical Disability
Multiple Sclerosis (MS): MS can affect the autonomic nervous system, leading to cardiovascular issues such as dysautonomia, which includes symptoms like abnormal heart rate and blood pressure regulation
Cerebral Palsy: Individuals with cerebral palsy often have an increased risk of cardiovascular issues due to physical inactivity, obesity, and other related health conditions
Spinal Cord Injury: Spinal cord injuries can significantly impact the autonomic nervous system, leading to cardiovascular dysregulation, including hypotension, bradycardia, and other autonomic dysfunctions
Acquired Brain Injury
Stroke: A stroke can result in autonomic nervous system dysfunction and cardiovascular issues, including arrhythmias and blood pressure variability
Traumatic Brain Injury (TBI): TBIs can lead to autonomic dysfunction, impacting heart rate, blood pressure, and other cardiovascular parameters
Psychosocial Disability
Mental Health Conditions: Psychosocial disabilities arising from conditions like schizophrenia, bipolar disorder, severe anxiety, and depression have a strong association with cardiovascular issues. Factors such as stress, medication side effects, and lifestyle behaviours contribute to increased cardiovascular risk.
Neurological Disability
Epilepsy: Some individuals with epilepsy experience autonomic changes during seizures, which can affect cardiovascular function, including heart rate variability and potential for sudden unexpected death in epilepsy (SUDEP)
Parkinson’s Disease: Frequently involves autonomic dysfunction, leading to cardiovascular issues such as orthostatic hypotension and heart rate variability
Early detection through comprehensive, accessible ECG monitoring does save lives or can at least prevent an adverse outcome. For example addressing Atrial Fibrillation with a relatively low cost common medical procedure and/or medications will avoid Stroke, which is often a significantly worse outcome not only because of the distress and higher disability but the ongoing economic burden is very significant which in some estimates can be as high as $70k/year. No doubt there would be out-of-pocket costs although some of it likely to be covered, so in that sense avoiding the Stoke represents a saving to the NDIS.
For our part, detecting Atrial Fibrillation for example (which can often be non-symptomatic and intermittent) allows the Participant to seek timely clinical assistance and intervention before a Stroke occurs.
Our hope as a member of the community.
- We do intend to conduct a few surveys in future and response will be highly appreciated
- I would invite anyone who may have the above disabilities to share some of their experiences with their heart health - to the extent they are willing of course.
- Yes quite obviously we would be delighted for anyone who takes up our service and we hope to build awareness of it (and its value) in the community - while taking on feedback
- Finally, we have created a Disability to Cardiovascular/Cerebrovascular Impacts database which basically maps the disability to the ECG data. This is so in future we can predict if a Participant is pattern-matching to a poor Cardiovascular outcome and increase vigilance accordingly. So, if anyone using our service would like to assist with additional information about their specific condition we will be keen to recognise their contribution. We believe the database is the first of its kind (noting that such a big statement is risky at the best of times
) - sorry for the overload of information Michael I hope you find it useful and hopefully others in the community too.