MHE (Multiple Hereditary Exostoses)

Lisa – 6th Grade
Multiple Hereditary Exostoses  is hereditary, which means it is inherited from one or both parents. According to the National Organization for Rare Disorders this disorder affects 1 out of every 90,000 people. MHE is a rare disorder that is distinguished by several bony growths or tumors, which affect mainly the long bones, which consist of legs, arms, fingers, and toes. It also affects the pelvis, shoulder blades and ribs and less often, the spine and skull. The tumors grow as long as the child is growing and when the child completes his growth the tumors growth slows considerably. Males and females are affected in equal numbers.

A child’s growth can be affected since the tumors grow near the growth plate of the bone. The effect of this can be shorter growth than expected due to the tumors on the “long” bones. On the forearm or lower leg, which consist of two bones, (forearm-the ulna and radius, lower leg-the tibia and fibula) an exostosis on one bone can slow the growth and cause trouble for the other bone. Since the bone growths collect around the joints children with this disorder can have problems with normal actions like walking, running, lifting, carrying, bending joints, kneeling, grasping, and arm and leg rotating. The tumor is painful when it is hit or bumped, and the rubbing of the tendons, muscles and other bones against the tumor will cause aggravation and pain. They barely turn into cancer, but they can turn into cancer. Those with Multiple Hereditary Exostoses have a higher chance of getting cancer. 

There is really no treatment for MHE except surgery. The inherited gene is such that it is a trait of the person who has the gene. Those who do not have the gene are not carriers meaning their children will not have it. Mainly the long bones are affected with tumors. Tumors on the knees, ribs, and other places may show up more than others. They may be removed, but not always. If the tumor is near a joint it may block normal actions. It is possible to remove this one. If a tumor is hitting on a nerve or a tendon it will need to be taken away to prevent damage. In some cases the tumor is not capable of being removed because it will affect a nerve. Some ways of correcting this is to either take out the bone or leave the tumor. Pain relievers or other alternative treatments may stop the pain.

Research today is being done in California, Texas, and most recently Canada. In California they are looking for a treatment to stop the growth of the tumors. In Texas they are researching how the pain affects the person, their body, and quality of life. They are attempting to correct the information in the medical textbooks. In Canada they are researching to take the little tumors or early growing tumors off so it will not affect the long bone.