My son Jack (2.5 yrs) was diagnosed as an infant with a very rare condition called Congenital Pseudarthrosis (his is tibial pseudarthrosis). It has been described as 'the most frustrating condition in orthopedics today" because there seem to be no treatments for it. A short definition is: a pathologic entity characterized by deossification of a weight bearing long bone followed by bending and pathologic fracture with inability to form normal callus, leading to the existence of false joints. Dorlan's Medical Dictionary
More simply, TP is a congenital disease which will most likely cause Jack's leg to fracture. The problem is, his leg bone will not heal if this happens, or if they were to perform surgery. There is no conclusive research as to how to prevent or treat this. Some doctors recommend amputation to prevent trauma. Some say to perform multiple painful surgeries and hope they will take. Bone grafts have been tried, with mixed results. Our orthopedist is in the 'wait and see' group.
Jack's life will most likely be permanently altered by this strange and rare condition. He will most likely wear a brace for the rest of his life. His leg will probably be deformed. He will be forced to limit his activity, so as not to fracture the tibia.
My sweet, loving, amazing boy has this condition, and it breaks my heart. However, I feel that if there was more attention paid to Tibial Pseudarthrosis, perhaps more research would be conducted and a cure will be found. I don't know how many families out there are dealing with TP. But with showing this story, maybe...we can somehow 'fix' Jack's leg, with the click of a mouse button.
Thank you for reading
Written by N. D. F. 18.10.10