Vahperd_SpringSummer2022

Activities for Physical Education for Students with a Enchondroma Disorder Hope Willingham , Longwood University Undergraduate Student Matthew D. Lucas , Ed.D.,Professor of Physical and Health Education, Longwood University

Introduction “I am rare, and there is value in all rarity; therefore, I am valu able” (Mandino, 1968). Og Mandino, anAmerican author born in 1923 once stated these previous words. This concept of value is something hopefully taught to children, regardless of ability level, through interaction with their families and peers from a young age. Children do not just learn this from their time playing with peers, but also from their interactions in classes, such as physical education class during school. Imagine a child born with an Enchondroma Disorder, a “type of orthopedic disorder causing benign tumor growth, such as Multiple Hereditary Exostosis (MHE)” (About MHE, n.d., para. 2). This little girl goes to a public school. As a student with a disability, the student should receive accommodations to allow her to not only interact with her class in physical education but also thrive. However, this is not the case for this student. Instead, she is left out of activities and simply told to watch, out of fear from the teachers that the girl will get hurt causing a variety of problems including potential serious injury and legal problems. There are no physical education modifications made to the activities done in the class so that she can be included, regardless of how simple these modifications can be. The little girl is use to this and does not expect anything more. However, remember, “I am rare, and there is value in all rarity; therefore, I am valuable”. Now imagine this little girl has grown up. By ninth grade, she is disillusioned and left out of physical education activities. By the tenth grade, this girl is not a part of any physical education lesson at all, she just sits in the bleachers and watches as her classmates interact, learn, and participate in physical education. Instead of participating and spending time with her classmates, the girl is given worksheets at the beginning of the year and told to finish them by the end of the year, with no inclusion of physical activi ties, much less anything adapted to her needs. Is this how physical education class could/should possibly be for a student with MHE? Remember, “I am rare, and there is value in all rarity; therefore, I am valuable”. Even though the age of this student has changed, her educa tional modifications have not. This is not an uncommon story. It is reasonable to assume that some physical education teachers simply do not know what to do for children with specific ortho pedic disabilities, are fearful of the student getting injured, and may opt to simply leave them out of physical activities rather than follow the procedures to adapt the tasks. This manuscript looks at potential appropriate activities that could be implemented to allow these students with one specific orthopedic condition, Multiple Hereditary Exostosis (MHE), to join and participate with their peers in physical education. Definition of Multiple Hereditary Exostosis Multiple Hereditary Exostosis is an autosomal dominant

disorder, meaning that one copy of this mutation can cause this disorder to appear in children (About MHE, n.d). The MHE Research Foundation explains the cause of this disorder in the following manner: “There are two known genes found to cause MHE. They are EXT1 located on chromosome 8q23-q24 and EXT2 located on chromosome 11p11-p12. Approximately 60% to 70% of mutations are located in the EXT1 gene and 20% to 30% are located in the EXT2 gene. In 10% to 20% of patients, no mutation is found. EXT1 and EXT2 have been identified as tumor suppressor genes since loss of heterozygosity at these loci occurs in MHE patients whose benign tumors transform into chondrosarcomas.” (About MHE, n.d., para. 2) The International Center for Limb Lengthening stated in 2021 that “MHE causes a failure of the body to stop cells that produce cartilage and bone growth near the growth plates located on the long bones.” (Multiple Hereditary Exostosis (MHE), n.d., para. 2) Characteristics Multiple Hereditary Exostosis is defined by John Hopkins Medi cine as “a genetic condition often passed down to a child by one parent, but it can also be caused by a genetic mutation, meaning it can occur on its own by a change. The gene for hereditary mul tiple exostosis [MHE] produces a protein that affects bone growth and development, causing bony growths called exostoses” (John Hopkins Medicine, n.d, Hereditary multiple exostosis (diahyseal aclasia), para. 2). Students with the disorder often display charac teristics similar to other orthopedic conditions such as Rheumatoid Arthritis and Scoliosis as they can cause mobility issues, limb length discrepancy, joint pain and swelling. The most common bones affected by this disorder: • Femur • Tibia • Fibula • Humerus (Multiple Hereditary Exostosis (MHE), n.d., para. 2) Even though these are the most commonly affected bones, more severe cases of this disorder can affect any or all of the bones found in the body (Multiple Hereditary Exostosis, n.n., para2). In addition to the aforementioned characteristics, John Hopkins Medicine states other symptoms may include the following: • Pressure on the tendons, nerves, and vessels • Angular deformities in the arms and legs due to the growths • Limb lengthen differences if one limb is more involved with the growths than the other • Growths can also become malignant (cancerous) in a small percentage of patients, roughly 5 percent (Hereditary mul tiple exostosis (John Hopkins Medical , n.d., para. 4) Please note that there no current cure for MHE. Surgical cor-

SPRING/SUMMER 2022 • VAHPERD • 7