Influenced by Robbinsville boy diagnosed with Evans Syndrome
TRENTON – Legislation sponsored by Senator Linda Greenstein designating September 21 of each year as “Evans Syndrome Awareness Day” in New Jersey cleared the full Assembly today, and now goes to the governor’s desk. This resolution was influenced after Senator Greenstein read an article in the Times of Trenton about a three-year-old boy named Nico, who was diagnosed with Evans Syndrome in May of 2015.
“I am truly hopeful that by creating Evan’s Syndrome Awareness Day, we can bring much-needed attention to this disease that thousands of people are struggling with daily. It is heartbreaking that someone as young as Nico is suffering with this condition, but I have been inspired by the courage he has shown in the short time I have known his family,” said Senator Greenstein (D-Mercer/Middlesex). “I hope this designation will bring greater understanding of this disease and the struggle that people have to deal with, especially those as young as Nico.”
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.
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. Because the exact cause of Evans Syndrome is unknown, the best treatment options for Evans Syndrome depend on many factors, including the severity of the condition, the signs and symptoms present, and each person’s response to certain therapies, and may utilize blood transfusions and stem cell transplants.
The resolution would respectfully request 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.
SJR-73 cleared the full Senate 35-0 last year. The Assembly approved it 72-0. It now heads to the governor’s desk.