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Tag Archives: inherited connective tissue disorder

A life of pain for Aoife

AOIFE Sage longs for just one day without pain. The 11-year-old Sixmilebridge girl wakes up in the morning in pain and goes to bed in pain. In addition to suffering from Hypermobility Ehlers Danlos Syndrome (HEDS), which involves the partial dislocation of her joints, she has been diagnosed with Chronic Pain Syndrome (CPS). HEDS is a type of Ehlers Danlos Syndrome (EDS), which is an inherited connective tissue disorder that affects approximately one in 5,000 people. The condition can affect every system in the body leading to a wide range of apparently unconnected symptoms, including joint pain and hypermobility, chronic fatigue, gastrointestinal issues and heart complications. With overlaps in the two syndromes, her mother, Susan admits it can be hard at times to distinguish what condition is causing her daughter the most difficulty. “Aoife has pain every day, which varies in intensity. Some days she can’t even hold a glass of water. Sometimes when she goes to walk, her legs …

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