DSN Superhero of the Month

Our April Superhero of the Month is Alexandra! DSN’s volunteers share their “spoons” to organize local events, share resources, help with outreach, moderate online communities, & much more. Alexandra has been a part of #DSN from the very beginning, as she drove 3 hours from New York to Rhode Island for our 1st meeting in 2012. “Several of those people there later became some of the best friends I have ever had!” She later became the New York Chapter Community Leader & the leader of our DSN Book Club. “I wanted the journey of others to be easier than it was for me. This is a hard road to travel, & no one should have to travel it alone.” Alexandra has learned that Ehlers-Danlos Syndrome (#

EDS) is her root cause of her dysautonomia, with symptoms occurring since childhood. Her Gastroparesis symptoms began at age 29. It took 1.5 years for diagnosis, “which is actually very fast, all things considered.” Since then, she has also been diagnosed with #POTS, #AN, #TC, CCI/AAI, #Osteoporosis, Osteoarthritis, #MCAS, #MTHFR, & a very rare chromosomal deletion, among other conditions. Before her illnesses, Alexandra was a Medical Social Worker, & was working her way into a job with Hospice. In her spare time she enjoys writing, reading, and playing video games. She recently has taken up photography, “especially sunsets at the beach in Florida.” She also loves traveling to spend time with her nieces and nephews. “Most of all I love beating my family at a great game of Canasta!” Alexandra shows what it means to accept the new person her illness has made her into. “In so many ways that are both majestic & simplistic, I am not the same person...that is neither a good thing nor a negative thing, it just is. Sometimes bad things really do happen to good people & there is no rhyme or reason for that--I am simply who I am. I have never been more accepting or comfortable with myself than I am now.” Thank you, Alexandra, for being a superhero in all that you do for DSN! #ThankfulThursday #DSN