Virtual Heart Coherence Training for Patients Aged 12 to 45 with Vascular Ehlers-Danlos Syndrome

What this Trial Is About

Vascular Ehlers-Danlos Syndrome VEDS is a serious genetic condition caused by changes in the COL3A1 gene, which affects the bodys connective tissue. People with VEDS face a high risk of dangerous events like aortic and arterial rupture, lung collapse, and organ perforation, along with chronic pain, fatigue, sleep issues, and mental health challenges such as stress, anxiety, and depression. These symptoms can trigger harmful nervous system responses that affect both physical and mental health. This research evaluates an 8-week, virtually delivered heart coherence training program using wearable biofeedback technology called HeartMath. The study randomly assigns up to 20 patients aged 12 to 45 years into two groups one receives HeartMath training and ongoing support, while the control group undergoes monitoring and weekly heart rate variability assessments before later accessing the training materials for fairness. The study compares outcomes between groups and before and after the intervention. Participants will complete baseline surveys and weekly virtual sessions including heart rate variability assessments. Those in the training group will practice HeartMath techniques twice daily and receive extra instruction and resources. Researchers will measure changes in blood pressure, heart rate variability, coherence ratio, mental health, and quality of life over three months. The trial aims to see if this program can help improve both physical and psychological outcomes for people with VEDS.

Heart Coherence Training on Vascular Ehlers-Danlos Syndrome Patients