It's not just having flexible joints and party ticks! People can experience much more than just 'joint issues'. And I am not mentioning this to scare anyone, but to hopefully help you connect the dots to your own health, so you can find comfort in knowing you're not going crazy! The paper "Defining the Clinical Complexity of hEDS and HSD: A Global Survey of Diagnostic Challenge, Comorbidities, and Unmet Needs" shows the complexity and co morbidities that link with hEDS and HSD. The authors argue the traditional “connective tissue disorder only” model may be incomplete. Patients commonly reported problems involving: - gastrointestinal system - autonomic nervous system - immune system - neurological system - musculoskeletal system - cardiovascular system Reported chronic pain rates were extremely high: - hEDS: 98.8% - HSD: 92.7% GI symptoms were among the biggest findings: - GI disorders affected: 84.3% of hEDS 69.0% of HSD - Gastroparesis was reported in: 21.2% of hEDS patients - Some required feeding tubes or nutritional support. Autonomic nervous system dysfunction was very common: - Dysautonomia: 71.4% in hEDS 40.3% in HSD - Postural orthostatic tachycardia syndrome was the most common subtype. The study found elevated rates of: - tethered cord syndrome - Chiari malformation - small fiber neuropathy Compared with HSD patients, hEDS patients reported significantly higher prevalence of these neurological diagnoses. One of the most striking findings: - average delay to diagnosis was over 20 years. A controversial and important finding: - 50% of people labeled HSD met hEDS criteria - 26% labeled hEDS did not fully meet criteria hEDS and HSD is probably one of the most ignored conditions ever to exist, and we need to bring more awareness to people so they can get the help they need! https://www.medrxiv.org/content/10.1101/2025.06.05.25329074v1

https://www.youtube.com/watch?v=I2j5YFWx7po