TRENTON – A resolution sponsored by Senator Linda R. Greenstein designating September 21 of each year as “Evans Syndrome Awareness Day” was approved today by the Senate.
Evans Syndrome is a rare autoimmune disorder that destroys the body’s red and white blood cells and platelets, making patients susceptible to illness and bleeding. Symptoms of Evans Syndrome are similar in nature to leukemia and lymphoma. While there is no cure for Evans Syndrome and therapies are often specific to the individual, many patients may have blood transfusions and stem cell implants to manage the disease. With proper treatment, many individuals suffering from Evans Syndrome go through periods of long remission.
“The intended purpose of this bill is to raise awareness about this extremely rare disorder, not just to educate residents about the disease but to stimulate dialogue that will hopefully lead to research efforts aimed at finding effective treatments,” said Senator Greenstein (D-Middlesex/Mercer). “Evans Syndrome has no cure and is highly challenging to detect because the signs and symptoms can vary greatly and are often mild enough that they are dismissed as less serious health issues.”
The inspiration for the resolution, SJR-67, came after Senator Greenstein read an article in the Times of Trenton about a then-three year old boy, Nico, from her district who was diagnosed with Evans Syndrome. Nico and his mother, Karen McLaughlin, of Robbinsville have been actively engaged in giving back to others by hosting toy and blood drives to help other children like Nico. Today, they joined Senator Greenstein on the floor to vote for the bill.
“Nico’s family has faced many challenges through his diagnosis and treatment, but they continue to plough through with inspiring resilience,” said Senator Greenstein. “I want Nico and his family to know they are not alone in their fight. By raising awareness about Evans Syndrome, we can increase the public’s understanding of the disorder, provide resources and connect those who want to learn more with those resources, and encourage the world of science and medicine to hear Nico’s voice and act to help him and others like him.”
Evans Syndrome resembles a combination of autoimmune hemolytic anemia, a condition in which red blood cells that normally carry oxygen and carbon dioxide are destroyed by an autoimmune process, and idiopathic thrombocytopenic purpura (ITP), a condition in which platelets, a component of blood that contribute to the formation of blood clots in the body to prevent bleeding, are destroyed by an autoimmune process. It is estimated that one in every 80,000 United States residents has immune hemolytic anemia, but less than one percent of these individuals has it in conjunction with ITP.
The resolution would require the Governor to annually, on September 21st, issue a proclamation recognizing “Evans Syndrome Awareness Day” in New Jersey and call upon public officials and the people of the state to observe the day with appropriate programs and activities. September is ITP Awareness Month, which raises public awareness for part of the pathology of Evans Syndrome.
The resolution was approved by the Senate with a vote of 40-0, and now heads to the Assembly for consideration.