Living with Vascular Ehlers-Danlos Syndrome (VEDS)

Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and loving the cows on her family farm. She hopes to share this positive view of life with chronic illnesses on her public Instagram page beyond.the.label_0 to help show other young people with challenging diagnosis that joy and a life worth living are still possible.  In this episode of the Major Pain podcast, she took a few minutes to talk to us about her journey with vascular Ehlers-Danlos syndrome from a lake near her home in Tennessee. Hannah started life as a perfectly healthy kid playing basketball, softball, cheerleading, and getting into trouble on the farm.  Even then she watched her brother struggle with seizures and a difficult road to diagnosis that ended with Chiari malformation and tethered cord syndrome.  When she got a concussion at the age of 13 everything seemed to change, and Hannah was also diagnosed with both Chiari and tethered cord, in addition to vascular Ehlers-Danlos syndrome (VEDS). She would later be diagnosed with postural orthostatic tachycardia syndrome (POTS) and is exploring the possibility that she may have mast cell activation syndrome (MCAS).  Her doctors narrowed in on the vascular form of EDS when she was 16 and began having pain, fever, and illness with her periods which became unpredictable, either missing months at a time or lasting up to a year of continuous bleeding. After many surgeries to release the Chiari, fuse vertebrae, release the tethered cord, and a difficult decision to have a hysterectomy at age 19 to resolve her constant bleeding, Hannah still would not change a thing.  Though she used to wonder why god would do this to her, she now sees the good that can come from perseverance.  She talks us through her history with VEDS, tells us about her medications and coping mechanisms, as well as how her chronic illness journey has strengthened her faith.  With her long term boyfriend and service dog at her side, Hannah is a resource for other patients going through similar life challenges as she continues to find what her future will bring. PlayWatch the episode on YouTube, or listen on your favorite podcast platform.