{
  "abstract": "Introduction Scleroderma is a rare, chronic autoimmune disease characterized by abnormal collagen deposition, leading to skin thickening, vascular changes, and, in many cases, internal organ involvement. With no known cure, management requires a multidisciplinary approach that addresses both the clinical manifestations and the profound impact on patients’ quality of life.This presentation integrates both professional expertise as a nurse and personal experience as a patient living with scleroderma to highlight the importance of education, empowerment, and self-advocacy in chronic disease management. Drawing from real-world challenges and successes, it will explore how patients can better understand their disease process, communicate effectively with healthcare providers, and develop strategies to live well despite ongoing symptoms.Topics will include the role of self-advocacy as a critical tool in navigating complex healthcare systems, fostering shared decision-making, and ensuring individualized care. Practical approaches—such as preparing for medical visits, building support networks, and adopting resilience-focused coping strategies—will be shared, with attention to their effectiveness in promoting well-being and independence. Attendees will learn strategies to develop their own self-advocacy toolbox.Material and Methods Presenter will use personal and professional experiences, as well as documented and peer-reviewed literature on the importance and effectiveness of incorporating self-advocacy into their care.Results Learning ObjectivesBy the end of this presentation, participants will be able to:Describe the pathophysiology and clinical manifestations of scleroderma as a chronic autoimmune condition.Explain the role of self-advocacy in improving patient outcomes and enhancing quality of life.Identify practical strategies patients can use to prepare for healthcare encounters and build supportive networks.Apply resilience-based approaches to promote independence and well-being in the context of chronic illness.Recognize the potential for patients to live meaningful, productive lives despite incurable conditions.Conclusions Attendees will leave with an enhanced understanding of scleroderma and chronic illness management, including identifying resources to help in this process. Furthermore, the attendees shall gain renewed confidence in their ability to actively participate in their care. The ultimate goal is to inspire hope that, even in the presence of a chronic and incurable condition, patients can lead meaningful, productive, and fulfilling lives.Furthermore, attendees may utilize strategies learned to develop their own self-advocacy toolbox.",
  "authors": [
    {
      "affiliations": [
        "West Hartford-Bloomfield Health District, Bloomfield, USA"
      ],
      "name": "Melissa Marquis"
    }
  ],
  "title": "P.303 The power of an engaged and empowered patient",
  "uid": "51aca082-57e3-5009-b42a-23ac245f87b0"
}