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Pyle syndrome symptoms

2 Feb 2017, 12:54 AM

Dear all I have hoping to connect with others who are familiar with Metaphyseal Dysplasia also known as Pyle syndrome. I have an 11 year old who was diagnosed with this approx three-four years ago. What has come to light is that he also has high bone density and very delayed healing. He has experienced four tibia fractures in the last five or so years which has impacted him enormously and has meant has has not been able to weight bear for well over six months. Two weeks ago his tibia refractured again. There are no known cases of this in Australia and because of the limited info available his highly specialised medical team are becoming very cautious. From what I understand high bone density and delayed healing have not been mentioned in the 25 or so published case studies. I would very much appreciate your experiences with this syndrome or knowledge of it. Kind regards