sábado, 31 de marzo de 2012

New Resources Available for Individuals Living with Microtia and Aural Atresia

February 22nd 2012

New Global Website Addresses Rare Congenital Deformities of the Ear

DENVER, Colo. – In the United States, one in every 6,000 children is born with Microtia and Aural Atresia, rare congenital deformities of the ear. The condition is sometimes characterized as “little ear” and is often accompanied by other syndromes and hearing loss that affect quality of life.

EarCommunity.com, a just-launched website, 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 most importantly, an opportunity for families and individuals to connect with a supportive online community.

The quality and depth of the information and resources available at EarCommunity.com also makes the site a valuable portal for medical professionals seeking the newest information on these rare conditions of the ear.

Access to the website’s continually-updated content is truly global, with instant translation to any of 48 languages.

In addition to the convenience and accessibility provided by the new website, resources and information exchanged within the community are saved, indexed and archived – creating a powerful bank of information not previously available.

EarCommunity.com is a labor of love for Melissa Tumblin, a Denver mom, who researched and gathered more than 100 web pages of highly visual content that includes articles, photos, videos and online forums. Tumblin’s 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 some degree of hearing loss. The minimal amount of information and support available following Ally’s diagnosis led Tumblin to seek the guidance of leading physicians, surgeons and audiologists who could help her acquire the accurate and authoritative information she needed to secure the best outcome for her daughter.

Her work with national and regional advocacy groups, medical organizations, leading physicians and researchers quickly made Tumblin a national resource on Microtia, Atresia and related disorders.

In 2010, she formed the Microtia and Atresia Support Group on Facebook and in June 2011 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 for 2012 in the US in California, Colorado, Texas, New York and New Jersey and in Canada in Toronto and Calgary.

“The website is packed full of invaluable information to help visitors understand all of their options so they can make the best decisions,” said Tumblin. “The website easily explains the surgical techniques that are available step-by-step, hearing device options, advanced technology and other helpful resources and services.

The website provides guidance on finding financial and educational assistance through government and non-profit agencies.”

The site also offers insight on securing Individualized Education and 504 Plans and Early Intervention Programs. A special section is devoted to helping youngsters and their parents address bullying and other discriminatory activities at school and within their communities.

Tumblin is especially proud of the many adults and children who share their life experiences and achievements – serving as much needed role models for the young people who participate in the online forums.

EarCommunity.com represents Tumblin’s newest endeavor in community-building for teens, adults and healthcare professionals. She views the website as a logical next step inspired by her desire to “simply make things easier for the next family who has a child born with Microtia and Atresia.”

The website has already been previewed and acknowledged by national and global organizations as well as surgeons, audiologist and healthcare professionals in a variety of disciplines around the world.

Fuente: http://www.healthyhearing.com/content/news/Assistance/Awareness/47858-New-resources-available-for-individuals-living-with-microtia-and-aural-atresia?utm_source=Healthy+Hearing+Newsletter&utm_campaign=e14c09763b-HH_Update_March_21_Issue_A_B&utm_medium=email

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