From the Guidelines
Preventative measures for patients with Ehlers-Danlos Syndrome (EDS) should prioritize regular vascular surveillance and medical treatment with celiprolol, as recommended by the 2024 ESC guidelines for the management of peripheral arterial and aortic diseases 1.
Key Recommendations
- Regular vascular surveillance of the aorta and peripheral arteries by DUS, CCT, or CMR is recommended for patients with vascular EDS (vEDS) 1.
- Treatment with celiprolol should be considered in patients with vEDS, as it has shown benefits in reducing the risk of arterial rupture and dissection 1.
- Patients with vEDS should avoid high-impact activities and invasive procedures, and should be closely monitored during pregnancy and delivery due to the increased risk of arterial rupture and dissection 1.
- Non-invasive vascular imaging is preferred over invasive imaging to minimize the risk of fatal complications in patients with vEDS 1.
Additional Considerations
- Physical therapy and low-impact exercise, such as swimming or walking, can help improve joint stability and proprioception, while reducing the risk of dislocations and injuries.
- Daily skin care using gentle, fragrance-free moisturizers can help prevent tears and bruising, as EDS skin is often fragile and prone to bruising.
- Patients with EDS should wear medical alert identification and maintain regular cardiovascular screenings to promptly identify and manage any potential complications.
- Pain management may include acetaminophen as a first-line medication, with NSAIDs used cautiously due to potential gastrointestinal effects.
- Braces or splints for unstable joints can prevent injuries during daily activities, and should be considered as part of a comprehensive management plan.
From the Research
Preventative Measures for Patients with Ehlers-Danlos Syndrome
Preventative measures for patients with Ehlers-Danlos syndrome (EDS) are crucial to manage the condition and prevent complications. Some of the key measures include:
- Physical therapy: Studies have shown that physical therapy can be an effective way to manage pain and improve quality of life for patients with EDS 2, 3, 4.
- Occupational therapy: Occupational therapy can help patients with EDS to develop strategies to manage their daily activities and reduce the risk of injury 2.
- Bracing: Bracing can be used to support joints and prevent subluxation, which is a common complication of EDS 2.
- Pain management: Pain management is a crucial aspect of EDS care, and patients may need to use a combination of medications, physical therapy, and other interventions to manage their pain 2, 3, 4.
- Lifestyle modifications: Patients with EDS may need to make lifestyle modifications, such as avoiding heavy lifting or bending, to reduce the risk of injury and prevent complications 5, 6.
Complementary Therapies
Complementary therapies, such as acupuncture, massage, and herbal supplements, may be used by some patients with EDS to manage their symptoms. However, the evidence for the effectiveness of these therapies is limited, and patients should consult with their healthcare provider before using any complementary therapies 3.
Multidisciplinary Care
Multidisciplinary care is essential for patients with EDS, as the condition can affect multiple systems and require input from different healthcare professionals. A care team may include physical therapists, occupational therapists, pain management specialists, and other healthcare professionals 2, 6, 4.
Future Research Directions
Further research is needed to develop effective treatments for EDS and to improve our understanding of the condition. Studies should prioritize larger sample sizes, clear definitions of EDS subtypes, randomized trials for treatment efficacy, and more studies dedicated to non-musculoskeletal forms of pain 4.