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Apr 9, 2019 · Teen Navigates Ehlers-Danlos Syndrome With the Help of Clinical Genomics

Nicole love your story and understand the obstacle course you've been through and most likely continue to navigate. My granddaughter Emily went through the same thing beginning in 2010 her first day of high school. Her "course" is EDS + Chiari Malformation + POTS + Mast Cell Disorder + Dystonias + CSF shunts + co-morbidities et al. She and her mother advocate, educate, and investigate. She's finally had a few weeks of "normalcy" and made a trip on her own first time flying NC to FL. Because of the EDS she has a port-a-cath to help access blood draws. They have been working for several weeks to find in Central and NE FL Home Health to help with this if necessary and can't find that help. So instead of an enjoyable vacation for her to visit her family & friends she's spending her time trying to locate this specialized help. <sigh> the fight continues.

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