Treatment of Ehlers-Danlos Syndromes
The treatment of Ehlers-Danlos syndromes focuses on managing symptoms, preventing injuries, and supporting long-term quality of life. As Ehlers-Danlos syndromes are genetic, there is currently no cure—but with early intervention and the right support, many people live active, fulfilling lives.
Doctors tailor treatment plans to each individual’s specific needs. They depend on the type of EDS and the severity of symptoms. Most patients benefit from a multi-disciplinary approach, involving physiotherapists, pain specialists, occupational therapists, and psychologists.
Physiotherapy plays a central role. A structured exercise programme helps stabilise joints, strengthen muscles, and reduce the risk of dislocations. Doctors avoid stretching because excessive flexibility can worsen joint instability. Doctors often recommend core strengthening, low-impact activities, and proprioception exercises to improve balance and coordination.
Pain management is crucial. Many people with EDS experience chronic pain due to joint instability, muscle fatigue, or previous injuries. Treatment may include:
Paracetamol and NSAIDs
Low-dose antidepressants or anti-epileptic medications for nerve pain
Physical therapy and massage
Cognitive behavioural therapy (CBT) to help manage the emotional impact of long-term pain
Braces or supports may be used to stabilise vulnerable joints, especially during flare-ups. Custom orthotics or mobility aids may be helpful in cases with severe joint laxity or fatigue.
Occupational therapy can assist with adapting daily tasks and preventing joint strain. Techniques include joint protection strategies, activity pacing, and ergonomic support for work or study.
Mental health support is vital. Living with EDS can lead to anxiety, depression, or frustration—especially when diagnosis is delayed or misunderstood. Support groups, therapy, and community awareness programmes can make a big difference.
Treatment of Ehlers-Danlos Syndromes
For rarer types like vascular EDS, more urgent medical oversight is needed. Patients must avoid high-risk activities and may require routine imaging to monitor blood vessels. Any sudden chest, abdominal, or limb pain must be treated as a medical emergency due to the risk of arterial rupture.
In South Africa, access to comprehensive treatment depends on location and medical coverage. While larger urban hospitals may offer rheumatology and physiotherapy services, rural patients often face long travel distances and limited care options. Non-profits and advocacy groups are working to increase awareness and support for those living with EDS across all provinces.
The treatment of Ehlers-Danlos syndromes requires long-term planning and ongoing support. Although it cannot reverse the condition, it empowers individuals to manage symptoms, protect their bodies, and improve daily functioning.
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