I am so sad to share the news of the passing of Yasmina Ykelenstam, known to many as the "Low Histamine Chef". I understand that she passed peacefully after a long-standing fight with breast cancer. Please know that devoted her life to living the best life possible through whatever challenges came her way, and tried to help others do the same. No matter your health … [Read more...] about A great loss for us all, Yasmina Ykelenstam
Dr. Diana Driscoll (President, Genetic Disease Investigators) together with EDS Network C.A.R.E.S. is conducting a blood study for patients with Idiopathic POTS (Postural Orthostatic Tachycardia Syndrome). Patients with and without Ehlers-Danlos syndrome can develop a form of dysautonomia called Idiopathic POTS (Postural Orthostatic Tachycardia Syndrome). The cause of this … [Read more...] about New Study for POTS!
Pictured: Linda Tannenbaum (President and CEO, OMF), Dr. Ron Davis (Director, OMF), Lynda Weinman, Dr. Diana Driscoll, James Driscoll (right to left) Dr Driscoll, Clinical Director of POTS Care and President of Genetic Disease Investigators, LLC was honored to be invited to the Open Medicine Foundation's Symposium at Stanford University. Dr. Driscoll joined researchers from … [Read more...] about Dr. Driscoll attends the Open Medicine Foundation research meeting at Stanford
Abnormal sleep is common in many “invisible illnesses” such as Idiopathic POTS, ME/CFS, and presumed Chronic Lyme Disease. It can escalate to the point that many of us have nearly reversed sleep/wake cycles – we are awake most of the night, and asleep most of the day! As a former Hyperadrenergic POTS patient, this certainly happened to me. I even had … [Read more...] about Could this commonly used supplement used for sleep be hindering your recovery from POTS?
I see a fair amount of discussion among patients with Ehlers-Danlos syndrome/Joint Hypermobility Syndrome (EDS/JHS) about the potential risks of pregnancy with our condition. As potential patients, do we need to be concerned about pregnancy? Will our bodies hold together? Can we get through delivery? Will we develop POTS after delivery? Do we need to take special precautions? … [Read more...] about Pregnancy and Ehlers-Danlos syndrome – reason for concern?