hEDS is so much more than just being bendy.

Just because you see someone on their feet and walking that doesn’t mean they’re not fighting invisible battles that you are not seeing. I struggle a lot on my feet. I have not left my house without a mobility aid in 5 years, because I do not feel stable on my feet. ❤️‍🩹 what conditions affect your mobility?

2025/10/10 Edited to

... Read moreHypermobile Ehlers-Danlos Syndrome (hEDS) is often misunderstood as just a condition of joint hypermobility. However, those living with hEDS frequently face additional comorbidities that significantly affect their mobility and quality of life. Beyond being 'bendy,' individuals with hEDS can encounter neurological and structural issues that compound their difficulties. One major comorbidity is dystonia, a movement disorder causing involuntary muscle contractions that create twisting and repetitive movements, impacting stability and coordination. Postural Orthostatic Tachycardia Syndrome (POTS) is another condition commonly associated with hEDS. POTS affects the autonomic nervous system, leading to symptoms like dizziness, fainting, and rapid heartbeat upon standing, which can severely limit mobility and independence. Femoroacetabular Impingement Syndrome (FAIS) involves abnormal contact between the hip bones, causing pain and restricted movement, complicating walking or weight-bearing activities. Peripheral neuropathy, characterized by nerve damage outside the brain and spinal cord, can cause numbness, tingling, or weakness in the limbs, further challenging balance and mobility. Lastly, flat feet, or pes planus, alter posture and gait patterns, often leading to discomfort and instability when standing or walking. Understanding these comorbidities is crucial because they are 'invisible battles'—symptoms may not be apparent to others but significantly impair daily function. Those with hEDS often need mobility aids long-term to feel secure and prevent falls. Raising awareness about these overlapping conditions helps promote empathy and better support for individuals managing these complex health challenges.

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