My name is Doreen and I am writing not as a Medical Professional, but as a mother who lost a daughter far too soon. She was 46 years old. A passionate mother and braver than I could have ever imagined. She lived her entire life with vEDS. Everyday Alycia fought with excruciating pain, constant fatigue, fear of rupture, and the emotional weight of a body that could betray her without warning. And yet just as painful the disease was, the experience of being dismissed, misunderstood, and silenced was devastating, by the very people she turned to for help. She was told her pain was due to anxiety. She was told she was exaggerating. She was told that nothing was wrong. But she knew her body better than anyone. She was told she was being overdramatic. She wasn’t. She was dying, slowly and silently. On May 17, 2025, on the same day as her son’s birthday, a day that will be forever etched in my brain, my beautiful daughter Alycia passed away. At first I thought it may have been from complications from Ehlers-Danlos (vEDS), but I have since learned that she died from an accidental overdose of fentanyl. Not from recklessness, but out of desperation of trying to ease a pain that the system refused to treat seriously. She was terrified of fentanyl due to the fact that it accidentally took the life of her cousin, three years ago. She didn’t want to die. She wanted to live. Especially for her son. But the world didn’t give her enough safe options. My husband and I, along with my family, cannot and will not let her death be in vain.
(Doreen Richard)
