June 2020: TAR Syndrome Awareness Month

WHEREAS, thrombocytopenia-absent radius (TAR) syndrome is characterized by the absence of a bone called the radius in each forearm and a shortage (deficiency) of blood cells involved in clotting (platelets); and,

 

WHEREAS, this platelet deficiency (called thrombocytopenia) usually appears during infancy and becomes less severe over time, and, in some cases, the platelet levels become normal; and,

 

WHEREAS, thrombocytopenia prevents normal blood clotting, resulting in easy bruising and frequent nosebleeds, with a potential of life-threatening episodes where severe bleeding (hemorrhages) may occur in the brain and other organs, especially during the first year of life; and,

 

WHEREAS, hemorrhages can damage the brain and lead to intellectual disability, although affected children who survive this period and do not have damaging hemorrhages in the brain usually have a normal life expectancy and normal intellectual development; and,

 

WHEREAS, cardiac anomalies, which are usually septal defects, can affect as many as 15-22 percent of those with TAR syndrome; and,

 

WHEREAS, the severity of skeletal problems in TAR syndrome varies among affected individuals, but the radius, which is the bone on the thumb side of the forearm, is almost always missing in both arms and the other bone in the forearm, which is called the ulna, is sometimes underdeveloped or absent in one or both arms; and,

 

WHEREAS, the prevalence of TAR syndrome is estimated at 1:200,000 to 1:100,000; and,

 

WHEREAS, TAR syndrome is unusual among similar malformations in that affected individuals have thumbs, while people with other conditions involving an absent radius typically do not; however, there may be other abnormalities of the hands, such as webbed or fused fingers (syndactyly) or curved pinky fingers (fifth finger clinodactyly), and some people with TAR syndrome also have skeletal abnormalities affecting the upper arms, legs, or hip sockets; and,

 

WHEREAS, when two parents are carriers, the chance of having a child with TAR syndrome is 25 percent, or 1 in 4, and, as a result, diagnosing carriers in a family also allows for family planning options;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim June 2020 as TAR Syndrome Awareness Month in Michigan.