Clare Stacey has vascular Ehlers-Danlos syndrome (vEDS) and shares her experiences for the Genetically Defined EDS: Strategies & Solutions for Unmet Needs Hybrid Meeting.

vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax.

"I am 43 years old, a retired Occupational Therapist, and a rare disease advocate.

Multiple vascular complications have provided me with a lived experience of the potential pitfalls in the diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS) complications. The condition is frequently misunderstood and underestimated, resulting in a very traumatic patient experience.

However, the lack of understanding of the disease process leaves BOTH patients and clinicians vulnerable. I feel a responsibility not only towards other patients and their families but also towards medical professionals.

I strongly believe that better collaboration and education between patients and clinicians can improve health outcomes. I hope that my presentation highlights some of the challenges and potential areas for development."