What Is CHARGE?
CHARGE has four major conditions and seven minor conditions. These conditions involve the eyes, ears, heart, and more. To be diagnosed with CHARGE, a certain number of major characteristics and minor characteristics must be present. Genetic research has found a gene mutation that can be used to confirm a CHARGE diagnosis. Up to date diagnositic information can be found on the website of the CHARGE Syndrome Foundation. For example, the ear of someone with CHARGE could be wide and have no earlobe. A substantial percentage of people with CHARGE have hearing loss.
A Spanish-language explanation of CHARGE syndrome is also available on the web.
Support
Organizations
In the United States, the CHARGE Syndrome Foundation holds conferences, has a newsletter, and other resources such as a medical manual, a brochure, and videotapes.
In Europe, there is a United Kingdom-based CHARGE Family Support Group.
Discussion Lists
A handful of discussion lists are available for parents of children with CHARGE to use in networking with each other:
- CHARGE-L - A majordomo-operated discussion list.
- CHARGE - This is a fairly active discussion list, with archives available only to members.
Personal Stories
Many families of children with CHARGE have web sites. These sites can be found on the CHARGE web ring.
Documents and Articles
The CHARGE Family Support Group offers a listing of archived documents. One document addresses providing coordinated care, and another document discusses caring for children with CHARGE following the initial diagnosis.
In addition, one family's web site features a newspaper article about their family.
