Complications of Ehlers-Danlos Syndromes
The complications of Ehlers-Danlos syndromes can be wide-ranging and vary depending on the type and severity of the condition. Because Ehlers-Danlos syndromes affect connective tissue throughout the body, complications may arise in the joints, skin, internal organs, and vascular system. Early diagnosis and proper management reduce the risk of serious long-term damage.
The most common complications include:
Joint dislocations and subluxations, particularly in hypermobile EDS. These can occur during daily activities and cause pain, instability, and soft tissue injury.
Chronic pain, which often worsens over time due to muscle fatigue, nerve strain, and joint instability.
Delayed healing, thin scarring, and skin that bruises easily or splits with minor trauma—especially in classical EDS.
Fatigue, which may stem from poor sleep, deconditioning, and constant pain.
In vascular EDS, complications are far more serious. The most dangerous risks include:
Arterial rupture, often affecting the aorta or medium-sized arteries
Organ rupture, especially in the intestines or uterus (during childbirth)
Internal bleeding, which may be life-threatening and require emergency care
Pregnancy in women with vascular EDS requires high-risk monitoring due to the risk of uterine rupture or vascular events. Women with other EDS types may also face challenges such as joint pain, pelvic instability, and premature delivery.
Digestive complications can also occur. These include irritable bowel syndrome, gastroparesis, and acid reflux, which are common in hypermobile EDS. Constipation and bladder dysfunction may result from weak pelvic support structures.
Other complications include:
Dental issues, like fragile teeth or gum disease
Frequent injuries, such as sprains, strains, and tendon ruptures
Depression and anxiety, often due to long-term pain, disability, or isolation
Adverse reactions to surgery, including poor healing or excessive bleeding
Complications of Ehlers-Danlos Syndromes
In South Africa, the complications of EDS are often compounded by delayed diagnosis, limited access to physical therapy, and a shortage of specialists. As a result, many people live with untreated symptoms or worsening disability. Education for healthcare workers and community awareness can help close the gap in care.
While the complications of EDS can be overwhelming, they are not inevitable. With proper care, most people can reduce injuries, manage their pain, and maintain independence. Support from family, health professionals, and the broader community plays a key role in this journey.
Understanding the complications of Ehlers-Danlos syndromes helps healthcare teams and families create realistic care plans and empower those affected to live more comfortably and safely.
