Symptoms I experience w #hypermobileehlersdanlossyndrome #hEDS #spoonielife #ehlersdanlosawareness #connectivetissuedisorder #chronicallylindsay #invisibledisability #disabilityawareness
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a subtype of a group of genetic connective tissue disorders characterized primarily by joint hypermobility, but it also involves a wide range of systemic symptoms that affect quality of life. Beyond the hallmark symptoms like flexible, bendy joints and frequent subluxations or dislocations, people with hEDS often face additional, less obvious issues that require comprehensive management. One significant challenge includes fragile or sensitive skin that bruises easily and shows petechiae — small red or purple spots caused by bleeding under the skin. This sensitivity arises from abnormalities in collagen, which weakens tissue strength and elasticity. Such skin symptoms add an extra layer of vulnerability to individuals and require careful skin care and protection. Cardiovascular dysautonomia symptoms, such as Postural Orthostatic Tachycardia Syndrome (POTS), cause rapid heartbeat and fainting spells due to blood flow abnormalities and blood pressure issues. These symptoms significantly affect day-to-day functioning and require medical evaluation and often tailored treatment approaches to manage safely. Gastrointestinal symptoms like gastroparesis (delayed stomach emptying), Superior Mesenteric Artery Syndrome (SMAS), malnutrition, and bone density concerns are common but often under-recognized. These issues can complicate nutrient absorption and overall health, necessitating multi-disciplinary care involving gastroenterologists, nutritionists, and physical therapists. Furthermore, mental health conditions such as depression, anxiety, and medical trauma are prevalent in people living with hEDS, stemming from the chronic pain and disability associated with the disorder. Addressing mental health through counseling, medication, and support groups is vital to improve overall well-being. Sleep disturbances, including insomnia, are frequently reported and can exacerbate other symptoms like pain and mood disorders. Effective symptom management for hEDS is typically multifaceted, including physical therapy to strengthen joints and muscles, pain management protocols, autonomic dysfunction treatments, and psychological support. Understanding hEDS requires recognizing its wide-ranging impact beyond hypermobility alone. Awareness and education on these diverse symptoms can foster better diagnosis, management, and support for patients living with this complex connective tissue disorder.

You are incredible ! I’m sorry, one of your videos popped up on my feed tonight and I’ve just been bingeing a bunch of them! I also deal with some chronic disabilities, I have a Service dog and she’s changed my life. Your “I’m fine! “ had me dying laughing. Every time I make a loud noise I yell that to my husband or sister (who ever is home). Or else they come sprinting thinking I’m having a seizure or something 😂. Anyways, just wanted to say hi and say thank you for your amazing, honest real videos!