CAMURATI ENGELMANN DISEASE (CED) - Also known as Engelmann Syndrome and Progressive Diaphyseal Dysplasia (PDD). Less common names include Osteopathia Hyperostotica Scleroticans, Ribbing Disease or Multiplex Infantalis.

This support group has been created for people with Camurati Engelmann's Disease (CED); in the hope that we may make new friends who understand what it's like to live with this condition; provide comfort, support and compassion during the hard times; share our unique experiences, discuss new treatments and learn from one another. With the hope we may use this invaluable information to help the doctors find a new treatment!


This very rare genetic condition affects approximately 200 people in the world. CED is considered an inherited disease passed from parent to child as an autosomal dominant trait, however a new genetic mutation may occur occasionally. CED causes the long bones in the legs and arms to become abnormally wide and may change the structure of other bones in the body (hands, feet, jaw and at the base of the skull). In simple terms, CED causes telltale changes in the structure of the femur and tibia (around the mid-shaft areas) as certain bone regions become abnormally thickened and hardened.

Symptoms include moderate to severe bone pain (especially in the long bones), skeletal disorders, severe limb pain, a wide-based waddling gait, joint contractures, with proximal weak and underdeveloped leg muscles. Additionally patients may experience headaches, sleep deprivation, fatigue, lack of appetite, vision problems, hearing loss, and aches in their hands, feet or jaw. The pain is described as constant, aching, stabbing, or burning. Pain often increases with activity, stress, illness and cold weather. Many individuals have intermittent episodes of severe pain and incapacitation. The enlarged bone shafts can also be palpable and tender on examination; cause intermittent limb swelling, erythema, and warmth when pain the intensifies.