Congenital Adrenal Hyperplasia
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Basic factual questions:

Which states require CAH screening for newborns?

After checking each states web site, and following up with phone call to the ones that didn't verify that they test for CAH on their web site, the following data was gathered. (Where applicable, state names link to the page that verifies that they do screen for CAH)

States that screen for CAH
Alabama, Alaska, Arizona1, Colorado, Connecticut2, Delaware3, Florida, Georgia, Hawaii, Illinois, Indiana4, Iowa, Maine5, Maryland6, Massachusetts, Michigan, Minnesota, Mississippi, New Jersey, New Mexico, North Carolina, North Dakota7, Oregon, Pennsylvania8, Rhode Island, South Carolina, Tennessee, Texas, Virginia, Washington, Wisconsin

States that do not screen for CAH
Arkansas, California, Idaho, Kansas, Kentucky, Louisiana, Missouri, Montana, Nebraska, Nevada, New Hampshire, New York (not yet),  Ohio, Oklahoma, South Dakota, Utah, Vermont, West Virginia, Wyoming

1. Confirmed via phone, 4/15/2002 by Bill Slanta, Chief, Office of Microbiology, Newborn Screening Laboratory, Arizona Department of Health Services Laboratory
  2. Confirmed via phone, 4/16/2002 by David Worsley, Supervising Biologist, Connecticut State Department of Public Health Laboratory
  3. Confirmed via phone, 4/15/2002 by Betsy Voss, Birth Defects/Newborn Screening Coordinator, Delaware Department of Health
  4. Confirmed via phone, 4/15/2002 by Weilin Long, Director of Newborn Screening Programs, Indiana State Department of Health
  5. Confirmed via phone, 4/16/2002 by Christina Armstrong, Screening Coordinator, Maine Bureau of Health
  6. Confirmed via phone, 4/16/2002 by the office of Dr. Susan Panny, Director, Office for Genetics and Children with Special Health Care Needs, Maryland Department of Health and Mental Hygiene
  7. Confirmed via phone, 4/16/2002 by the office of Karen Oby, MPH, LRD, Maternal and Child Health Nutrition Coordinator, North Dakota Department of Health
  8. Confirmed via phone, 4/16/2002 by Barbara Kandro, Supervisor, Pediatric Biochemistry Section, Pennsylvania Department of Health, Bureau of Laboratories

 


How do I get my state to screen newborns for CAH?

Simply put, you lobby. Below are some web sites that can provide information on the process, regulations and legalities of lobbying. While these sites may be focusing on other issues, the methods they teach are applicable in your efforts to change the laws in your state.

http://www.asla.org/Members/publicaffairs/lobbystatelegis.htm
   A nice simple outline of the process of lobbying your state legislator.
http://www.electionreform.org/ERMain/getinvolved/stateleg.htm
  A simple outline of how to contact your state legislature, with actual state by state contact info.
http://www.independentsector.org/clpi/index.html
  Lot's of information, especially about non-profit organizations lobbying.
http://www.ombwatch.org/article/articleview/142/1/65/
  Information about Congressional delegations, state and local officials, and media resources in your area.
http://www.learn-to-lobby.com/
  Web sites not enough? Here's a book you can order.

Where do I get medical bracelets?

Many people with CAH use Medic Alert (http://www.medicalert.com/). You get not only a bracelet or necklace (with a number of styles to choose from) but a 24 hours toll free number for emergency responders to call for whatever medical information you feel they need to know. Currently it's $35 to join (which includes the cost of the bracelet or necklace) and $20 a year after that to renew. And you can renew online.

There are other companies that offer medical bracelets, (http://www.medids.com/, http://www.escopes.com/, http://www.fifty50.com/, http://www.lifejewelry.com/, http://shop.store.yahoo.com/lifetag-alert/lifmedid.html, http://www.childsid.com/) but do not offer the 24 hour phone backup.

Are there any support groups for adults with CAH?

I guess that would depend on what you mean by support group. If you mean an actual, face-to-face group that meets on a regular basis, no. CAH is rare enough that there generally are not many people within any city or even county to make a support group of that kind.  That's why the internet has become the arena for CAH support, education and information sharing. On the People and Support Groups page you will find several web pages listed. For the most part message boards have served as the meeting place for people supporting each other. Most message boards either focus on CAH in general, Late Onset CAH or as on this site, location or topics. While we have a Kid's Board, the responses regarding a possible Adults-with-CAH board have been emphasizing the need for fewer boards with more traffic. There are many adults with CAH who post on our main board as well as some of the boards on other sites. So far they seem to find this more than adequate in their need for communication and support.