There are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.
Rare Disease: Osteosarcoma
Brief Description: From among the many forms of rare bone cancers, osteosarcoma is considered the most common type of bone cancer. The average age at diagnosis is 15. Boys and girls have a similar incidence of this tumor until late adolescence, at which time boys are more commonly affected. It is considered even more rare for osteosarcoma to occur in adults. Although osteosarcoma tends to occur in the larger bones, such as the shin (near the knee), thigh (near the knee) and upper arm (near the shoulder), it can occur in any bone. A number of variants of osteosarcoma exist. The cause of osteosarcoma is not known. In some cases, it runs in families, and at least one gene has been linked to increased risk. Treatment varies from person to person and may include surgery, chemotherapy, radiation therapy and samarium.
Rare Connection: There was a nagging soreness in his left knee that 2018 Uplifting Athletes Rare Disease Champion Award finalist Casey O’Brien figured he could play through. He’d figure it out after his high school freshman football season was over. He was the quarterback, and he wasn’t hurt. So he played. The pain did not go away and his father, Dan, was concerned. A series of x-rays and tests didn’t reveal anything, so O’Brien charged forward and went into high school hockey tryouts. Only problem was he could no longer skate because of the lingering pain in his knee. Another round of tests, including an MRI, revealed the deeper problem. O’Brien, who remembers that Friday vividly, was diagnosed with osteosarcoma. By Monday he had the first of what would be become 10 surgeries and more than 150 days in the hospital over an 18-month span. All those days in the hospital gave the resilient O’Brien plenty of time to think. A three-sport athlete growing up, sports was all O’Brien knew. He loved football the most, and wanted to get back on the field, but his options were limited. One night, while lying in a hospital bed receiving another round of treatment, O’Brien and his father hatched up a plan. While enduring ongoing chemotherapy treatment, O’Brien played for Cretin-Derham Hall High School as a holder despite being only 115 pounds and bald. His playing schedule was two weeks on and week off to mirror his treatment schedule. A late-night plan hatched in a hospital bed played out for two seasons at Cretin-Derham Hall High School and continues today… Just last year, Casey O’Brien earned a spot on the University of Minnesota Gophers football squad as a walk-on holder.
Learn More: There are three FDA approved treatments for osteosarcoma, Fusilev, Leucovorin calcium and Methotrexate. To learn more about clinical trials go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH), National Organization for Rare Disorders (NORD) and Global Genes.