What is Ehlers-Danlos Syndrome Hypermobility Type (HEDS)/Joint Hypermobility Syndrome (JHS)? HEDS is a hereditary connective tissue disorder arising from a genetic mutation that leads to abnormalities in a protein that is present throughout our body in connective tissues and various organs. HEDS is characterized by these features: 1. Laxity of ligaments that hold joints together leading to generalized hypermobility of joints, 2. Complications arising from joint instability, 3. Widespread pain in muscles, joints or associated soft tissues, and 4. Symptoms related to other bodily systems.      HEDS is also described as joint hypermobility syndrome (JHS), especially in the context of a disabling pain syndrome arising from HEDS. 

What are the symptoms of HEDS/JHS? Children with HEDS/JHS can show these symptoms: ­ Joint and muscle pains. The child lives with a lot of pain on a daily basis.  ­ Joint dislocations with minor or seemingly insufficient impact or trauma. The child finds it painful to sit or stand for long. Poor seating conditions cause these children a lot of pain.  ­ Unusual gait. Avoidance of running and sports. Poor muscular coordination. The problems of small hand joints may show up as bad or slow hand writing.  ­ Immunity issues including asthma, allergies.  ­ Eye problems ­ Poor wound healing ­ Bowel/bladder issues ­ Sleep disturbances leading to lack of attention and fatigue ­ Some children have an associated condition called dysautonomia ­ dysfunction of the autonomic nervous system that is responsible for controlling many bodily functions like heart rate, blood pressure, digestion, etc. Dysautonomia may contribute to some of the symptoms listed below.  ­ Fatigue, child may be inordinately and more easily exhausted compared to peers.  ­ Stomach pain, digestive issues, nausea ­ Sensory hypersensitivities. The child may be very uncomfortable in heat, they may get dehydrated very quickly. Cold temperatures may aggravate joint pains ­ Headaches ­ Heart problems. Even without a diagnosed heart disease, the child can have severe palpitations after exertion making them feel very sick.  ­ Dizziness, feeling faint or actual fainting, confusion. Heat and continuously sitting or standing may aggravate these symptoms. 

The impact of HEDS/JHS on a child The child may look absolutely healthy and "normal", but may be struggling with serious health issues. He may often be accused of pretending to be sick or lying about pain. His pain and problems need to be believed in order to help him. The child with HEDS/JHS feels different from others for being sick, or unable to do things others can. She struggles with self-esteem and confidence issues. She may try to hide her pain and push herself beyond her limits in order to "fit in".

A Guide to Ehlers-Danlos Syndrome Hypermobility Type/ Joint Hypermobility Syndrome in Children Part - I

While physical support like mobility aids, good seating, writing aids, care during sports and physical training are important, the child also needs encouragement and acceptance to deal with the physical and psychological impact of a chronic and disabling disease and be the best they can be.

Understanding Validation Support Hypermobility Syndrome India