What is TAR Syndrome?
Thrombocytopenia Absent Radius (TAR Syndrome) is a rare genetic condition affecting roughly 1:250,000 births. It is characterized by very low levels of platelets (which help your blood clot) and missing the radial bone, in each forearm. There are many different variations of how people can be affected by TAR Syndrome.
Missing additional arm bones and different lower limb differences, such as missing knee joints are common. People can also have heart and kidney problems, or bowed legs, as well as dairy allergies.
The greatest mortality risk for a person with TAR is during the first two years of life. Because platelets and sometimes red blood cell levels are unpredictable and low, the risk of hemorrhage from an injury is much higher. Frequent transfusions are common to keep platelets in a safe range, particularly while kids are young. Typically platelet numbers improve and stabilize beginning around age two which reduces the need for frequent transfusions.
Rare disorders are financially challenging. Because it is rare, there is not enough research devoted to the syndrome, which means limited knowledge and resources. Families often travel far distances to see specialists, to receive therapies and devices. Often treatments take you away from home for weeks or months at a time.
The most important thing to know is that these kids and adults are strong, they are determined and they are unstoppable. They are artists, teachers, writers, nurses, professionals, dancers, and athletes. Challenges are overcome every day. These families are strong, creative, adaptive and unique!