Bendiness Linked to Years of Mystery Illnesses

For many, bendiness is not just flexibility but a sign of Hypermobility Spectrum Disorders (HSD), a connective tissue condition causing joints to move beyond the normal range. This can lead to years of unexplained symptoms including fatigue, pain, and digestive problems. Vivienne Duval's experience, where she finally identified her years of health issues as HSD after seeing a social media video, is common.

Research from the University of Edinburgh indicates that patients in the UK with hypermobile Ehlers-Danlos Syndrome (hEDS) and HSD face average diagnostic delays of 19 to 21.7 years. This lengthy wait is partly due to the absence of a dedicated clinical guideline for diagnosis by the National Institute for Health and Care Excellence.

Experts note that diagnosis can be inconsistent, affecting women more frequently. Many diagnosed individuals report GPs initiating limited management, with few accessing knowledgeable clinicians. This gap in care leaves patients like Vivienne feeling unsupported, often resorting to social media for information and coping strategies.

Younger individuals, such as Luke Grindlay, diagnosed with HSD in primary school, also face challenges with diagnosis and self-management due to a perceived lack of available information and imposter syndrome. Symptoms can worsen after stressors like puberty or menopause, impacting social life and career prospects. While treatments like physiotherapy exist, more systemic recognition and support are crucial.