Advocating for family members, Cathy Pederson PH.D., Neuro Connect Summit 2019

Cathy Pederson, Ph.D., founder of Standing Up To POTS, discusses the complexities of family dynamics and advocacy for those dealing with POTS and related conditions like EDS and MCAS. She shares her personal experiences as a mother of a child with POTS, highlighting challenges such as finding quality medical care, dealing with financial pressures, and overcoming societal stigma. Pederson emphasizes the emotional impact on families, including feelings of grief, loss of mobility, and the stigma of being burdensome. To counter these challenges, she suggests open communication, education about the illness, and family activities that accommodate the patient's limitations to maintain connection and support. Pederson encourages sharing personal experiences within support groups to foster understanding and healing.