Press Room>Current News>Prenatal Dexamethasone Position Statement
CARES FOUNDATION STATEMENT OF POSITION ON PRENATAL DEXAMETHASONE
(UNION, NJ, March 18, 2010) – As the only United States-based organization devoted entirely to improving the lives of those affected by the genetic disorder Congenital Adrenal Hyperplasia (CAH), CARES Foundation is committed to providing the most up-to-date information on this disease. For decades individuals and families affected by CAH had lived in virtual isolation with little to no access to information on the disease much less new developments in the treatment or understanding thereof. Since its founding in 2000, CARES has worked tirelessly to bring such information to families around the globe to facilitate informed decisions.
CARES Foundation also always has been keenly aware of the power our organization holds as a centralized resource and the need to qualify all information presented as for educational purposes only and that in no way should it be taken as the provision or practice of medical, nursing, or professional healthcare advice or services. We are not a medical expert association. Therefore, we constantly remind families that information presented by CARES Foundation should not be considered complete and should not be used in place of the visit, call, consultation or advice of a physician or other healthcare provider. It should not be used to diagnose or treat CAH or any other disorder without first consulting a physician or other healthcare provider and that we do not specifically endorse any treatments or physicians.
We are guided by medical experts and in particular the 2002 Joint LWPES/ESPE CAH Working Group’s “Consensus Statement.” In line with this statement, CARES Foundation maintains prenatal treatment of CAH with dexamethasone is considered experimental and may be viewed as controversial by some. It has been shown to ameliorate genital virilization in a large number of cases; however, “long-term safety has not been proven in patients treated to term or in the 7 of 8 fetuses in whom treatment was stopped because they are male or unaffected.”
Throughout the past ten years CARES has presented both the pros and cons of this treatment: encouraging dialogue and further study. We have published more than a dozen articles on prenatal dexamethasone treatment in our newsletter and how it relates not only to the fetus but also to the mother and mothers affected by CAH. We encourage further research, and are committed to making available to the CARES Community the full history of and most up-to-date information available on this treatment including anything new that comes out of a new consensus statement on CAH expected out later this year.
Congenital Adrenal Hyperplasia (CAH) is a family of inherited disorders affecting the adrenal gland. Over 90% of those diagnosed with CAH are affected by 21-hydroxylase deficiency. Inherited in severe, moderate and mild forms, the major types of CAH are Classical and Non-Classical CAH. The severe form of CAH or Classical CAH can result in life-threatening imbalances in salt and hormone levels. If undetected at birth, Classical CAH can lead to adrenal crisis and death. Frequently, newborn babies show no outward signs of the disorder and are sent home only to present a few weeks later for urgent medical attention at a time when they are beyond resuscitation. Classical CAH also is the most common cause of urogenital birth defects in affected females. The mild form of CAH may cause symptoms at anytime from infancy through adulthood. While each individual presents differently, common symptoms include: premature development of body hair, body odor, rapid growth spurt, but ultimately short stature as adult, early puberty, severe acne, anxiety, depression, mood swings, migraines and infertility. The genetic frequency of Classical CAH is approximately 1 in 10-15,000 births. NCAH affects 1 in 100 to 1 in 1000 in the general population, depending upon the ethnic composition of a given community, since its frequency varies in different ethnic groups. For example, it affects one in 27 Ashkenazi Jews, one in 40 Hispanics, one in 53 Croatians, and one in 300 Italians. All forms of CAH are managed through oral medication that regulates hormone levels and replaces hormones not made by the body.
About CARES Foundation…
CARES Foundation, Inc. is a 501(c)3 non-profit organization committed to improving the lives of families and patients affected by CAH through pro-actively advancing research for a cure; educating the public and healthcare providers about all forms of CAH; advocating for universal newborn screening; immediate, appropriate emergency medical treatment; and comprehensive lifelong care; as well as providing support services and resources vital to the CAH community world-wide. For more information on CARES and CAH, please visit our website at www.caresfoundation.org or call 866-277-3737.
CARES Foundation Contact:
Dina Matos, Executive Director (firstname.lastname@example.org)
2414 Morris Ave., Suite 110
Union, NJ 07083