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: Aplastic Anemia
Brief Description: Aplastic anemia is a rare, serious blood disorder, due to the failure of the bone marrow to produce enough new blood cells. Although bone marrow failure can occur secondary to other disorders, most aplastic anemia is due to the immune system mistakenly targeting bone marrow (autoimmunity). Aplastic anemia generally leaves you feeling fatigued and with a higher risk of infections and uncontrolled bleeding. Specific symptoms vary from case to case, though. Some individuals may have mild symptoms that remain stable for many years; others may have serious symptoms that can progress to life-threatening complications. Aplastic anemia may occur suddenly, or it can occur slowly and get worse over a long period of time. Treatment for aplastic anemia may include medications, blood transfusions or a stem cell transplant, also known as a bone marrow transplant.
Rare Connection: Former Princeton running back Jordan Culbreath was living out his dream at Princeton in 2009. The native of Falls Church, Virginia was getting the Ivy League education he desired and the walk-on was having a real impact on the football field for the Tigers as a standout running back. But prior to the season, Culbreath was experiencing severe headaches and fatigue. He chalked it up to football and the added pressure of being named a team captain. He kept his symptoms to himself. Luckily, he sprained his ankle in the second game that season against Lehigh and told the team doctors the other symptoms he was dealing with. The medical staff immediately had his blood tested and it revealed Culbreath was battling the rare blood disorder aplastic anemia. Had he not sprained his ankle the second game of the year it could have been much worse. Culbreath’s blood count numbers were dangerously low and potentially fatal. He immediately started treatment and missed the entire 2009 season. After six months, he was medically cleared to play football again. At first, his priority was to get healthy. Once he was healthy enough to think about playing football again, Culbreath focused on a return to the field. He came back in 2010 and played his final season for the Tigers, scoring the winning touchdown in overtime against Lafayette in only his second game back. His courage and ability to overcome served as an inspiration for not only his teammates, but the entire Rare Disease Community. And in 2011 Culbreath won the Uplifting Athletes Rare Disease Champion Award. Culbreath graduated from Princeton with a Mechanical Engineering degree, and since 2011 has worked for the investment banking firm Merrill Lynch in New York City. Culbreath still receives treatment for his rare blood disorder, and knows he was fortunate that a sprained ankle probably saved his life. The 2011 Rare Disease Champion will continue to inspire others with hope by serving as the Keynote Speaker for the inaugural Uplifting Athletes Young Investigator Draft next month at Lincoln Financial Field in Philadelphia.
Learn More: There is no cure for aplastic anemia. There are currently more than 200 clinical trials involving aplastic anemia. 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.