“Our experiences matter, our futures matter, and our lives matter…”
VEDS Movement community member Isabella shares in first-person why the V matters to her to raise awareness during VEDS Action Month.
The V matters to me because living with vascular Ehlers-Danlos syndrome has shaped so much of my life, from the way I navigate my health to the way I think about my future. Being diagnosed at a young age meant having to come to terms with realities and uncertainties that I never imagined I would have to face.
But beyond my own experiences, the V matters because it represents an entire community of people whose lives are affected by this condition. Too often, VEDS is misunderstood, overlooked, or grouped together with other forms of Ehlers-Danlos syndrome, despite the very different risks and medical considerations that come with it.
Recognizing those differences is not simply a matter of awareness, but one of patient safety.
To me, the V represents the importance of being heard, believed, and understood. It represents the need for greater education among healthcare professionals, earlier recognition and diagnosis, continued research, and access to appropriate medical care.
Most importantly, it represents the people behind the diagnosis. Every person living with VEDS deserves the opportunity to live a full and meaningful life without having their experiences or the seriousness of their condition minimized.
The V matters because our experiences matter, our futures matter, and our lives matter.
The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS).