Time to Listen to Ehlers-Danlos Syndrome

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Ehlers-Danlos Syndrome is one of the most challenging rare diseases for both patients and healthcare providers. With 13 subtypes, varying presentations and levels of disability, changing symptoms and the potential to impact multiple organ systems, EDS is marked by severe pain and comorbidities that can make every day functioning a Herculean struggle.

 

EDS is highly under-diagnosed and often misdiagnosed, creating unnecessary suffering and financial challenges for patients, and the excessive burden of time, resources and money for healthcare providers. Yet the true prevalence of this condition is astounding – 1 in 2,500. It is a condition that is literally hiding in plain sight.

 

The average time to diagnosis of an EDS patient is 14 years. Once patients are diagnosed, obtaining care can still be an uphill battle. Providers often feel they do not have the clinical skills, nor the time in their practice to treat this complex disease. Patients and caregivers, exhausted by the ordeal of seeking qualified care, may find communication with providers frustrating, leading to disharmony and distrust that can erode the therapeutic partnership.

Time to Listen to Ehlers-Danlos addresses these challenges by providing communication trainings for both HCPs and patients to help bridge the trust gap that often occurs with this community.

 

We offer programs to help healthcare providers achieve the following objectives:

  • Recognize the symptoms of EDS

  • Develop a plan for appropriate diagnostic testing for patients who present with EDS symptoms

  • Demonstrate insight and understanding of the true and unmet needs of the EDS patient.

  • Demonstrate compassion for patients experiencing chronic pain and lengthy, frustrating diagnostic journeys

  • Communicate compassionately with patients and caregivers whose lives are physically and emotionally challenging

Time to Listen™ to Ehlers-Danlos HCP Trainings

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Participants will be able to:

  • Recognize challenges of lengthy diagnostic journey for EDS patients and families

  • Identify multiple comorbidities associated with EDS and their corresponding treatments

  • Recognize and appropriately treat significant pain caused by EDS

  • Recognize PTSD or patient trauma and make appropriate mental health referrals

  • Communicate effectively and compassionately with EDS patients and families using skills

       learned in an interactive training experience

Time to Listen™ to Ehlers-Danlos in the ED

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Participants will be able to:

  • Recognize symptoms of potential EDS patients and employ the latest diagnostic protocols

  • Understand and better meet some of the most common and unique needs of an EDS patient in an ER setting

  • Utilize effective and compassionate communication skills to help EDS patients feel respected, encouraging trust in the healthcare system

  • Identify unconscious bias in the system toward patients reporting chronic pain without an easily identifiable cause

  • Integrate the perspectives of patients, caregivers, clinicians, ED staff and health systems to construct solutions that address the needs and concerns of everyone affected by SCD

Time to Listen™ to Ehlers-Danlos Through Telehealth

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Participants will be able to:

•Determine appropriate goals and uses of telehealth visits in EDS patients

•Demonstrate best communication practices during telehealth visits

•Perform a physical exam via video

•Identify symptoms and complications that require additional testing or treatment and prescribe each appropriately

•Communicate compassionately with an EDS patient, demonstrating an awareness of the ongoing impact of their past healthcare experiences

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Time to Listen™ to EDS for In-Patient Management

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Participants will be able to:

  • Develop the linguistic tools to confidently communicate with HCPs

  • Ask pertinent questions and provide thorough and detailed symptom descriptions using a disease-specific vocabulary

  • Develop an understanding of the resources that are available to them during an inpatient stay.

  • Confidently form a therapeutic alliance with their care team in order to be compliant with a mutually-agreed upon treatment plan and standard of care

Time to Listen™ to EDS for Medical Students

Participants will be able to:

  • Recognize the symptoms of EDS

  • Identify the multi-organ comorbidities that characterize EDS

  • Communicate effectively and compassionately with EDS patients using skills learned in an interactive training experience

 

Patient Trainings

For patients who need to feel heard and respected by the healthcare community, we offer programs to develop communication skills to enable them to:

  • Restore confidence in their ability to advocate for themselves or a loved one.

  • Prioritize goals and facilitate communication between healthcare providers.

  • Clearly and concisely describe symptoms and express the physical and emotional hurdles they face daily

  • Develop a communication style for provider encounters that promotes a tone of professionalism and compassion

All programs are available in-person or remote