“Hi I’m Amanda, @chronicallymandy02. I have hEDS, POTS, MCAS, Gastroparesis, Endometriosis, Asthma, Prinzmetal Variant Angina (PVA), chronic migraines, and chronic pain.
My journey started early in life at age 6 with Asthma and symptoms of EDS, mainly joint pain and stomach issues. Fast forward 10 years I finally got diagnosed with hEDS and PVA after ending up in the hospital at age 16 in 2018 after having what is called Prinzmetal Variant Angina which is a spasm of the coronary artery. Due to EDS I have experienced bulging and herniated disks as well as dislocations and subluxations of joints. I had suspected Gastroparesis, POTS, and MCAS at the time of my hospital visit but just last year I finally got a diagnosis of Gastroparesis after struggling with it for years. Also this year I got a diagnosis of ENDO after years of painful long periods and found a doctor who was able to confirm and diagnose my POTS and MCAS.
I was very lucky to find doctors through my journey that have diagnosed me and helped treat my conditions with various medications and therapy’s. I am also very thankful for @rarepatientvoice for making these study opportunities available as they help me make some money to support myself in a way that is both helpful to myself and the company the survey is for.
Thank you Rare Patient Voice for letting me share my story, I hope it inspires others to share theirs as well.”