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Ehlers-Danlos Syndrome: The Lengthy Road to Diagnosis

key information

source: Cincinnati Childrens

year: 2013

authors: Derek Neilson


For people with Ehlers-Danlos syndrome, a genetic disorder affecting the strength of collagen that provides the body support, structure, and stability, the road to diagnosis can be lengthy. The reasons for this can differ from person to person, but are often related to confusion over the multiple types of Ehlers-Danlos syndrome and the many signs and symptoms associated with the condition. We most frequently see the hypermobile type of Ehlers-Danlos Syndrome (EDS-HT) in our Connective Tissue Clinic. From growing pains to grown-up pains, here are the most common scenarios we see:
-An active nine-year-old girl sees her doctor because of pain in her legs at night and pain in her hands when writing at school. She describes her leg pain as “all over,” but says they go away with Tylenol. Her doctor reassured her family that these are “growing pains.”
-A 13-year-old girl begins having problems after spraining her ankle playing soccer. Healing takes a lot longer than expected and when she returns to the game, she dislocates her shoulder. Two additional surgeries are required because the shoulder “falls out” after the first. Over time her neck, hips, knees, and ankles develop chronic daily pain that interfere with her concentration and make it difficult to sleep. Headaches become a daily occurrence and some of them cause her to leave school early. She also begins to feel dizzy and “blacks out” with standing.

organization: Cincinnati Children's Hospital Medical Center

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