Kaitlin Jones works to find joy in the little things.
Jones, 31, said it’s a priority of hers to look for silver linings, especially when she’s followed by something of a “grim reaper.”
For all intents and purposes, Jones looks like any average woman her age. But just because she doesn’t look ill doesn’t mean that she isn’t; Jones has a rare genetic condition, the vascular type of Ehlers-Danlos syndrome, also known by the syndrome’s community as VEDS.
“VEDS is a defect in Type III collagen,” Jones explained in a recent interview. “You have a faulty type of collagen, and so the connective tissues in your body become very weak. This puts us at risk for life-threatening complications where arteries and organs can spontaneously rupture and bisect.”
Jones, a physician’s assistant herself, said the condition can manifest differently, depending on things like a person’s age and family history. Her maternal grandmother had the syndrome, and the family believes she passed it down to Jones’ mother, and then Jones and her brother, Trevor, inherited it.
She currently receives care at Hoag’s Jeffrey M. Carlton Heart & Vascular Institute and lives a relatively normal life, but the path to finding help took nearly six years after she was diagnosed.