From the Guidelines
Patients with Ehlers-Danlos Syndrome (EDS) should be managed with a multidisciplinary approach, prioritizing their unique needs and risks, particularly in the context of HCOM (Holistic College of Osteopathic Medicine) programs, where accommodations and adaptations can be made to support their education and healthcare management. When considering the management of EDS, especially in the context of HCOM programs, it's crucial to understand the condition's impact on the individual's quality of life, morbidity, and mortality.
Key Considerations for EDS Management
- Early identification and thorough family inquiry are crucial for diagnosing vascular Ehlers-Danlos syndrome (vEDS), as highlighted in the 2024 ESC guidelines for the management of peripheral arterial and aortic diseases 1.
- Clinical complications may start during adolescence and repeat at unpredictable time intervals, involving medium-sized arteries, such as dissections, aneurysms, arterial ruptures, and arteriovenous fistulas 1.
- Prognosis depends on the type of COL3A1 variant, with null variants showing a better outcome, and life expectancy is reduced to an average of 51 years 1.
- Pregnancy is a high-risk period for women with EDS, particularly those with the vascular form, due to the risk of rupture of the gravid uterus and vessel rupture at delivery or in the postpartum period, as noted in the 2010 ACCF/AHA/AATS/ACR/ASA/SCA/SCAI/SIR/STS/SVM guidelines for the diagnosis and management of patients with thoracic aortic disease 1.
Recommendations for HCOM Programs
- Disclosure and accommodations: Students with EDS should disclose their condition to receive appropriate accommodations, which might include modified seating, extended exam time, or adjusted clinical rotation schedules.
- Osteopathic manipulative treatment (OMT) techniques: OMT techniques can be adapted for EDS patients to avoid joint hypermobility complications, and students with EDS may find that osteopathic medicine provides valuable perspectives for their own healthcare management.
- Collaboration with disability services: Students with EDS should work with disability services to ensure their educational needs are met while managing their condition, and the combination of osteopathic principles with personal experience of EDS can potentially make these students particularly empathetic and knowledgeable physicians for patients with similar conditions. Given the most recent and highest quality study available, the 2024 ESC guidelines for the management of peripheral arterial and aortic diseases 1 provide the most up-to-date recommendations for managing EDS, emphasizing the importance of early identification, thorough family inquiry, and a multidisciplinary approach to care.
From the Research
HCOM and Ehlers Danlos
- HCOM is not explicitly mentioned in the provided studies, however, Ehlers-Danlos syndrome (EDS) is a condition that affects the connective tissue and can present with a variety of symptoms, including joint hypermobility, elastic skin, and chronic pain 2, 3, 4, 5, 6.
- The hypermobile type of EDS (hEDS) is characterized by joint hypermobility and/or instability in one or more joints, and patients with this condition may experience chronic pain and require a comprehensive treatment plan 3, 5.
- Treatment options for EDS patients include non-opioid medications, physical therapy, and psychological support, as well as complementary and alternative therapies such as traditional Chinese therapies, herbal medications, and marijuana 2, 3, 4.
- Surgical management may be necessary for patients with shoulder and knee instability related to hEDS/JHS, and orthopedic surgeons should be aware of the unique challenges and considerations involved in treating patients with EDS 5.
- A comprehensive approach to pain management, incorporating non-opioid medications, physical therapy, and psychological support, can offer effective pain relief and improve the quality of life for EDS patients 3, 4.
- Further research and investigation are necessary to develop a comprehensive treatment database for EDS and to address the unique needs of patients with this condition 2, 3, 4, 6.