Target: Kathleen Sebelius, U.S. Secretary Health and Human Services
Goal: Save the lives of children born with 22q deletion syndrome by including it in the U.S. Newborn Screen.
22q deletion syndrome is a chromosomal disorder that causes over 180 mild to severe issues ranging from heart defects to behavioral differences. Despite the disorder being almost as common as Down syndrome, and the available test costing only $6, many children struggle for years undiagnosed because the test is not being used as part of the U.S. Newborn Screen. Please sign this petition in support of adding the test for 22q deletion syndrome to the U.S. Newborn Screen and help save millions of lives.
According to the International 22q11.2 Foundation, 22q deletion occurs in approximately 1 in every 2,000 to 4,000 live births, although this is likely a gross underestimate due to misdiagnoses. 22q deletion syndrome is caused by a missing section of chromosome 22 which is present from the time a child is conceived.
Characteristics of the syndrome vary extensively, although some key issues include heart defects, palate differences, feeding and gastrointestinal difficulties, immune system deficits, growth delay, hearing loss, endocrine issues, cognitive and developmental delays, and behavioral, emotional and psychiatric differences. Basically, 22q deletion syndrome can affect every aspect of a person’s body, mind, and spirit.
In an effort to correctly diagnose and treat the syndrome quickly and efficiently, doctors have developed a sensitive and specific test costing only $6. Early intervention allows for specialized treatments to be implemented, thereby giving people a better chance of surviving the syndrome. This inexpensive and necessary test would prevent misdiagnosis and unnecessary treatments that are costly, painful, and damaging for families.
Please sign this petition and urge the U.S. Secretary of Health and Human Services to add 22q deletion syndrome to the list of diseases tested as part of the U.S. Newborn Screen.
Dear Secretary Sebelius,
22q deletion syndrome is a chromosomal disorder that causes over 180 mild to severe issues ranging from heart defects to behavioral differences. The syndrome is caused by a missing section of chromosome 22 which is present from the time a child is conceived. Deletion syndrome is almost as common as Down syndrome and yet it is not included in the U.S. Newborn Screen.
This oversight has caused millions of people to go undiagnosed or be misdiagnosed resulting in a plethora of associated complications and cost, including death. Please include the test for 22q deletion syndrome in the U.S. Newborn Screen and help families effectively treat the syndrome.
According to the International 22q11.2 Foundation, “Though not always present, the key characteristics of this syndrome include combinations and varying degrees of: heart defects, palate differences, feeding and gastrointestinal difficulties, immune system deficits, growth delay, kidney problems, hearing loss, low calcium and other endocrine issues, cognitive, developmental and speech delays, behavioral emotional, and psychiatric differences (ADHD, autism, anxiety, etc.)” Because the associated symptoms of deletion syndrome are so expansive, people are often misdiagnosed.
Doctors have developed a test for deletion syndrome that costs only $6. Adding the test to the U.S. Newborn Screen would allow parents to seek specialized interventions early in life, thus increasing the chance for a better quality life as they get older. Early detection would also prevent families from wasting money on misdiagnoses, ineffective treatments, and the emotional toll of sickness.
Please add 22q deletion syndrome to the U.S. Newborn Screen and help save lives and improve quality of life for people with the syndrome.
[Your Name Here]
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