One in every 6,000 children born in the United States has microtia and aural atresia, rare congenital deformities of the ear. The condition, sometimes characterized as "little ear," often is accompanied by other syndromes and hearing loss that affect quality of life.
A new website, EarCommunity.com, is the first to offer support and resources to individuals and families around the world living with microtia/atresia and associated syndromes, including hemifacial microsomia, Treacher Collins and Goldenhar syndrome.
The new website provides practical information, advocacy resources, surgical and technology solutions, inspirational stories, news and latest research, and an opportunity for families and individuals to connect with a supportive online community. The information and resources available on the website also make it a valuable portal for health care professionals.
The resources and information exchanged within the community are saved, indexed and archived. The website offers instant translation in 48 languages.
EarCommunity.com was originated by Melissa Tumblin, of Denver, whose daughter Ally was born with microtia, a congenital disorder that causes a deformity of one or both ears in which the outer ear is underdeveloped or absent. Like many children with microtia and atresia, Ally also experiences hearing loss. The minimal amount of information and support available following her daughter's diagnosis led Tumblin to seek the guidance of physicians, surgeons and audiologists in acquiring accurate and authoritative information to secure the best outcome for her daughter.
Tumblin ultimately gathered more than 100 Web pages of highly visual content, including articles, photos, videos and online forums. In 2010 she formed the Microtia and Atresia Support Group on Facebook, and last June she launched the first annual Colorado Microtia & Atresia Family Summer Picnic. The enthusiastic response of her support group led Tumblin to plan a series of family picnics this year in California, Colorado, New Jersey, New York and Texas, as well as in Toronto and Calgary in Canada.
"The website is full of invaluable information to help visitors understand all of their options so they can make the best decisions," explained Tumblin. It provides step-by-step information on surgical techniques, options for hearing devices and advanced technology, and other helpful resources and services.
The site provides guidance on finding financial and educational assistance through government and nonprofit agencies and offers insight on securing individualized education plans (IEPs), 504 plans and early intervention programs.
Many adults and children share their life experiences and achievements, serving as much-needed role models for the young people who participate in the online forums. A special section is devoted to helping youngsters and their parents address bullying and other discriminatory activities at school and in their community.