For decades, I was misdiagnosed and mistreated, and both of my children have inherited my rare genetic disease known as Ehlers-Danlos Syndrome (EDS). This condition has deeply impacted our lives, and gaining proper treatment has been a constant struggle. As a result of the lack of specialized care, we and many others in the South Carolina and Western North Carolina areas remain underserved.

The Ehlers-Danlos Syndrome is a group of rare genetic connective tissue disorders that can lead to a range of health issues that require a multidisciplinary approach for proper management and care. Unfortunately, patients like myself are suffering due to a severe deficit in accessible and sufficient medical resources. The existing program at the Medical University of South Carolina (MUSC) has reached a breaking point. It is so overwhelmed with patients that it can no longer accept new applicants, even on its once three-year-long waiting list.

This shortage highlights an urgent need in our communities for a dedicated multidisciplinary clinic to address Ehlers-Danlos Syndrome, where an increasing number of patients remain untreated or without a clear care pathway. Therefore, I am calling on Prisma Health to establish a specialized Ehlers-Danlos Clinic. Such a clinic would ensure that patients receive the coordinated care they desperately need, combining expertise from various specialties such as genetics, orthopedics, cardiology, and more.

The need is dire. Approximately 1 in 5,000 individuals worldwide are affected by EDS, and many remain without an accurate diagnosis for years, leading to unnecessary suffering. After the new diagnostic criteria are released this year the Ehlers Danlos Society estimates that 1 in 500 individuals will be affected. We need a healthcare system that is proactive and attentive to these communities’ needs. Establishing this clinic would not only alleviate pressure from existing medical facilities but also streamline patient care and improve health outcomes.

By opening a new Ehlers-Danlos clinic within Prisma Health, we can build a future where effective and timely medical treatment is the norm, not the exception. This service would revolutionize the way patients in the South Carolina and Western North Carolina region access their healthcare, significantly reducing wait times and the burden on existing facilities.

Please, join me in petitioning Prisma Health to open a dedicated Ehlers-Danlos Syndrome clinic. We need your support to bring this vision to life and provide hope and treatment to thousands of underserved patients. Sign this petition and be a part of this crucial change for our community.