Syracuse Chapter President Sam Heckel using his rare disease journey with TTP to inspire others

RARE DISEASE SPOTLIGHT GRAPHICThere 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: Thrombotic Thrombocytopenic Purpura (TTP)

Brief Description: Thrombotic thrombocytopenia purpura (TTP) is a rare and serious blood disease. The consistent symptoms may include a severe decrease in the number of blood platelets, abnormal destruction of red blood cells and disturbances in the nervous system and other organs occur as a result of small clots that form in the smallest arteries. The exact cause of TTP is unknown. It is generally believed that there is an acquired, or non-inherited, form of TTP and a familial form. The acquired form may appear later in life, in late childhood or adulthood, and affected individuals may have a single episode or recurring episodes. This is referred to as immune mediated TTP. If the disorder is present at birth, or familial form, signs and symptoms may typically appear in infancy or early childhood. This is referred to as congenital TTP. The most recent data suggests the rate of occurrence for TTP is about 3.7 cases per million people annually, and two-thirds of individuals with TTP are women. The most common occurrence is in individuals between the ages of 20 and 50 years old.

Rare Connection: Syracuse offensive lineman Sam Heckel understands the value of using his platform as a major college football student-athlete to shine a spotlight on the Rare Disease Community better than most. It’s why the redshirt sophomore, who started all 12 games for the Orange last season at left guard and is expected to be a force up front again in 2018, became the Syracuse Football Chapter of Uplifting Athletes President. Heckel has lived with the congenital version of the rare blood disease Thrombotic Thrombocytopenic Purpura (TTP) since he was a toddler. In order to manage his extremely rare congenital form of TTP, the 6-4, 280-pound native of Wisconsin undergoes plasmatherapy one a month and it generally takes 14-20 hours for Heckel to get all the ADAMTS13 enzymes his body needs from the plasma. And he will likely undergo this treatment protocol the rest of his life. Just because he plays football on Saturday for the Orange, doesn’t mean once a month he doesn’t have to make a trek to the hospital on Sunday for his treatment. The Monday after his plasmatherapy treatments are the toughest. The offseason is manageable, but during football season, winter conditioning and spring drills it takes a team effort. During his treatments when football is front and center, Heckel is in frequent communication with the Syracuse strength & conditioning staff and his coaches about how he’s feeling. If necessary, they make arrangements to adjust his workout schedule and meeting times, so he can recuperate. Heckel nearly died from his rare disease when he was in second grade when his platelet numbers became so low he started to have organ failure. He survived after more than two weeks in the hospital, but unsure of what the future held, his parents contacted the Make-A-Wish Foundation.  When Heckel was 10 years old his wish was granted in the form of a two-week vacation for his entire family in Hawaii. What somebody else did for him stuck with Heckel. He views his story and the Uplifting Athletes Chapter at Syracuse as a way to help others and pay it forward. In his words “My wish was granted. I owe it to others, now”


Patient Groups: Answering T.P.P. Foundation.

Getting Social: Facebook: Answering T.P.P. Foundation

Learn More: There is no cure for congenital TTP, but the FDA approved drug SD Plasma is used to treat TTP. There are currently more than 80 clinical studies involving TTP. 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.




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