Someone Must Have This Arm Abnormality Still Trying To Find Someone With It?

Question

MY 18 YEAR OLD DAUGHTER WAS BORN WITH CONGENITAL RADIAL-ULNAR SYNOSTOSIS.THE RADIUS AND ULNA BONES ARE FUSED TOGETHER SO FAR FROM THE ELBOW DOWN.THE ARM IS MUCH SHORTER THAN THE OTHER AND SMALLER AND SHE DOES HAVE A LOT PAIN IT WHICH IS GETTING WORSE AS SHE GETS OLDER.WE HAVEN,T BEEN TOLD MUCH ABOUT THIS CONDITION.I HAVE BEEN ON THE NET BUT IM UNABLE TO FIND ANYTHING IN AUSTRALIA ON IT,SO IM WONDERING HOW RARE IT IS IN AUSTRALIA OR HOW MANY CASES REPORTED IN AUSTRALIA?WOULD LIKE TO FIND SOMEONE ELSE WITH IT IN AUSTRALIA.

THANKS VERY MUCH FOR YOUR ANSWER.HER CONDITION IS SHE CAN ONLY TURN TO A HANDSHAKE POSITION,YES WE DO SEE AN ORTHOPEDIC BUT STILL DONT GET ANY ANSWERS BECAUSE HE SAYS ITS RARE BUT DONT KNOW HOW RARE, HE IS STILL TRYING TO GET LITERATURE ON IT.CHEERS FROM TASMANIA.

Answer 1

What your daughter has is quite rare. Something went wrong during her development inside your womb. Even in orthopedic texts, little is the discussion regarding this case. The condition may be bilateral or unilateral. Usually there is difficulty or absence of pronation and supination of the forearm. The usual position is that of pronation(hand facing downward) such that activities of daily living like eating with utensils, brushing teeth, drinking water, etc. are almost impossible. I don't know if your daughter has her extremity in a functional position. If not, some surgery can be done to make her extremity functional. The results of attacking the fusion in the radius and ulna are not very encouraging. I would suggest you look for an orthopedic surgeon who can sit down and discuss this rare condition with you.