A child who sprains an ankle too often, a teenager living with persistent joint pain, or an adult repeatedly told their symptoms are minor or unrelated — for many patients, these seemingly ordinary complaints are the earliest signs of Ehlers-Danlos Syndrome (EDS). Affecting the body’s connective tissue, EDS can involve the joints, skin, blood vessels and internal organs, yet it continues to be widely under-recognised in clinical practice. Doctors warn that when early signs such as recurrent injuries, unexplained bruising, fragile skin or chronic fatigue are dismissed, diagnosis is delayed for years — increasing the risk of long-term disability and, in certain subtypes, serious medical complications.
“Many early symptoms appear harmless and are often dismissed. Frequent ankle sprains, recurrent joint pains in teenagers, easy bruising, soft or velvety skin, slow wound healing and chronic fatigue are often brushed off as ‘growing pains’, and even routine OPD evaluations may not link them to a connective-tissue disorder,” says Dr Ramineni Tejaswini, senior consultant rheumatologist at Apollo Hospitals, Jubilee Hills.
Among the various subtypes, doctors urge the greatest caution with vascular EDS. “Among all the subtypes, vascular EDS (Type IV) is the one that keeps us the most cautious. The collagen involved in this form is essential for the strength of major blood vessels and hollow organs. When that structure is weak, arteries can tear without warning, and even small injuries to the bowel or uterus can have serious consequences,” explains Dr Aruna S Malipeddi, senior consultant rheumatology at Arete Hospitals.
What makes this subtype particularly dangerous is its unpredictability. Doctors stress that not all hypermobility is EDS, and careful evaluation is essential. Dr Tejaswini states, “What separates EDS from simple hypermobility is the presence of systemic signs like fragile skin, frequent dislocations, unexplained bruising, gastric issues, autonomic symptoms and a strong family history. A structured assessment combining physical examination, cardiac evaluation, dermatological findings and, when needed, genetic testing helps differentiate it accurately.”
Monitoring EDS, especially its vascular form, requires a balance between vigilance and practicality. “For vascular concerns, regular follow-ups are more important than constant scanning. Most patients benefit from periodic ultrasound or CT angiography to keep an eye on the larger arteries. Any new, sharp pain in the chest, abdomen, or back should never be dismissed. I also encourage patients to track changes in blood pressure, unexplained bruising, or sudden swelling. These small cues, when reported early, give us time to intervene before things escalate,” she further cautions.
Chronic pain is one of the most common and exhausting symptoms of EDS. Dr I Rajendra Vara Prasad, senior consultant rheumatologist, Yashoda Hospitals, emphasises that long-term management must move beyond medications alone. He highlights, “Physical therapy, cognitive behavioural therapy, pain education, and lifestyle changes are some of the non-pharmacological approaches that are most effective in managing chronic pain in EDS. Non-opioid drugs are preferred when necessary, and opioids should be taken with caution.” He adds that multidisciplinary pain clinics help patients develop strategies that minimise medication dependency while improving daily function.
Physiotherapy remains central to EDS care. He notes, “Physiotherapy for EDS includes muscular strengthening, joint stabilisation, posture re-education, and proprioceptive training. Water treatment, isometric and resistance training, and the use of braces or supportive clothing are especially helpful. Patients should remain active but adapt their activities to prevent high-impact or vigorous workouts. Low-impact activities like swimming, cycling, and gentle resistance exercises help maintain strength while avoiding joint stress. One of the biggest challenges patients talk about is not being believed. The pain is real, but the diagnosis often takes years.”
Wearable technology is emerging as a supportive tool in EDS care. “Trackers that monitor step count, balance, or heart-rate fluctuations help us pick up early signs of overexertion or autonomic issues Heart-rate activity trackers, especially for vascular EDS, help in detecting overexertion or unusual patterns that could signal risk,” shares Dr Aruna adding, “Pregnancy is very possible for most women with EDS, but it needs planning. Those with vascular EDS need a high-risk obstetric team and careful monitoring of blood vessels throughout pregnancy.”
While there is no cure yet, research continues to offer hope.