Let's Face It: October 2006 Archives

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October 27, 2006

New Bullying Book

We had a great inaugural event today, and Betsy is a simply wonderful speaker. While Betsy was here, she mentioned a book on bullying that has impressed her.

Help! I'm Being Bullied
Dr. Emily Lovegrove
http://www.bullyingdoctor.com/

Betsy said this book is primarily for teens and their parents, with alternating chapters written for each audience. It offers a range of strategies, with memory aids to help pull the ideas out when you need them.

While the book is strategies that are independent of the source of the type of bullying, Dr. Lovegrove's primary research and clinical experience has been with children with facial difference. Here is the research behind the book.

Lovegrove E, Rumsey N. Ignoring it doesn't make it stop: adolescents, appearance, and bullying. Cleft Palate Craniofac J. 2005 Jan;42(1):33-44. PMID: 15643925. Abstract

Posted by pfa at 04:57 PM | Comments (0)

October 25, 2006

New Let's Face It Web Site is Live

The new and revised web site for Let's Face It has gone live to the public as of 12:27pm today. You may visit the new site to see what is different at:

Let's Face It: http://www.dent.umich.edu/faceit/

We will continue to develop the site and add new content. This represents our initial efforts to enrich on Betsy Wilson's wonderful efforts, and to expand the original Let's Face It site in some new directions.

My congratulations and thanks to all who worked so hard to make this possible!

Posted by pfa at 12:59 PM | Comments (0)

I want to know the number of facially disfigured in the US ...

Q:
Can you direct me to a website or publication that gives the statistic of how many Americans are facially disfigured? I would like to have this number for a paper that I am writing for my elective class.

A:
There are so many different ways to answer this question, I am not sure even where to start! It really depends on how you define "facial differences", which is potentially a broad concept.

There is a huge range of genetic conditions that can result in facial differences. There are also oral or head/neck cancers, trauma, and skin conditions that may or may not effect the face. There may be statistics for each of these individually (which would be a huge project). If there is a source that gives an overall estimate
of incidence or frequency, you would want to first find out how they were defining the concept.

To begin with, please look at the Let's Face It page on General Information > Reference, which includes a section on Statistics. This is the mostly likely place to find the sort of information you want for your paper.

Next, let's look at some strategies you could use to find answers for this question.

STRATEGY #1:

There are overall stats for birth defects, but you have to remember that not all of these involve the face.

CDC: National Center for Health Statistics: FASTATS: Birth Defects: http://www.cdc.gov/nchs/fastats/bdefects.htm

Edmonds, Larry D.; James, Levy M. Temporal Trends in the Prevalence of Congenital Malformations at Birth Based on the Birth Defects Monitoring Program, United States, 1979-1987. MMWR December 01, 1990 / 39(SS-4);19-23.
http://www.cdc.gov/MMWR/preview/mmwrhtml/00001892.htm

Rolv Terje Lie et al, "A Population-Based Study of the Risk of Recurrence of Birth Defects," NEJM 31(1) 1994:1-4.

STRATEGY #2:

You can look for statistics for diseases or conditions that effect a specific part of the face. Here are a couple examples.

Here are statistics for cancer of the eye:

National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Eye and Orbit:
http://seer.cancer.gov/statfacts/html/eye.html

Statistics for oral cancers:

National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Oral Cavity and Pharynx: http://seer.cancer.gov/statfacts/html/oralcav.html

National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Tongue: http://seer.cancer.gov/statfacts/html/tongue.html

STRATEGY #3:

You might also want to look for statistics on specific conditions known to effect the face.

Stanford Craniofacial Anomalies Center: Hemangiomas: http://craniofacial.stanford.edu/HemangiomaPAGE.html
"The incidence of hemangiomas is 10-12% in Caucasian children."

Stanford Craniofacial Anomalies Center: Cleft Lip / Palate:
http://craniofacial.stanford.edu/CleftLipPalatePAGE.html
"One in every six hundred births a cleft occurs in some form."

Stanford Craniofacial Anomalies Center: Craniosynostosis: http://craniofacial.stanford.edu/CraniosynostosisPAGE.html
"Plagiocephaly occurs the most often. It happens in approximately 1 out of 2500 births."

International Craniofacial Institute: Cleft Lip and Palate Statistics: http://www.craniofacial.net/sf/cleft_lip_and_palate.htm

eMedicine: Plastic Surgery: Craniofacial: Craniofacial, Cleft Palate Repair, by Pravin K. Patel MD: http://www.emedicine.com/plastic/topic168.htm
"Frequency: The incidence of cleft lip/palate (CL/P) by race is 2.1/1000 in Asians, 1/1000 in whites, and 0.41/1000 in blacks."

Posted by pfa at 08:58 AM | Comments (0)

Update: American Academy of Maxillofacial Prosthetics

When we have updates or changes to our organizations list, we may not always be able to post those changes to the website immediately, but we will post those updates here.

---------------------------------------------

American Academy of Maxillofacial Prosthetics

"The Academy is devoted to the study and practice of methods used to habilitate esthetics and function of patients with acquired, congenital and developmental defects of the head and neck."

Dr. Steven P. Haug
Executive Secretary/Treasurer
1121 West Michigan Street
Indianapolis, IN 46202
Tel: 317-274-5571
Fax 317-278-2818
Email: sphaug@iupui.edu
Web: http://www.maxillofacialprosth.org/maxillo/maxillofacial/HomeContent.htm

Posted by pfa at 08:50 AM | Comments (0)

October 24, 2006

Betsy Wilson Speaks at UM this Friday

Just a reminder that this event is this week.

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. Betsy will be speaking from noon to 1pm at an event in Room G378 of the University of Michigan School of Dentistry. The event is open to the public. Light refreshments will be served.

The UM version of the site will be at:
http://www.dent.umich.edu/faceit/

Press Release:
Craniofacial Disfigurements Web Site to be Transferred to U-M -- "Let's Face It" Leader to Speak at Dental School Oct. 27
http://www.dent.umich.edu/about/aboutschool/news/news2006/news100406.html

Event Information and Poster:
Facing Life With a Different Face -- Betsy Wilson:
http://www.dent.umich.edu/faceit/FaceItPoster.pdf

Posted by pfa at 02:27 PM | Comments (0)

October 19, 2006

First National Conference on Living with Facial Differences

AboutFace is delighted to announce the First National Conference on Living with Facial Differences.

Inspiration 2006 will be held on October 27-28, 2006, at the Wyndham Bristol Place Hotel, Toronto.

More information is available at their website:
http://www.aboutfaceinternational.org/programs/national_conference.php

Posted by pfa at 10:34 AM | Comments (0)

I am looking for a group or anyone who has Oral Facial Digital Syndrome ...

Q:
I am looking for a group or anyone who has Oral Facial Digital Syndrome.

A:
There are several different names for this condition. Searching by the various names might help you find more information.

Orofaciodigital syndrome
Oculo-dento-digital syndrome
Oculo-dento-digital dysplasia
oral facial digital syndrome
Cranio-Oro-Digital syndrome
Digital-Oro-Cranio syndrome
Juberg Hayward syndrome

We found one support group that seems to be related.

Oculo-Dento-Digital Dysplasia Support Group
8810 Orchard Road
Pikesville, MD 21208
Phone: 410.580.0882
URL: http://www.odddsupportgroup.com
Contact: aboutus@odddsupportgroup.com

Here is a selection of links to information that might be helpful.

FaceIt: Juberg Hayward: http://del.icio.us/faceit/juberg.hayward

Posted by pfa at 10:26 AM | Comments (0)

I am looking for a video or audio tape ...

Q:
I am looking for a video or audio tape about image, behavioral skills, or self-image and persons with facial differences.

A:
The organization Forward Face has digital videos online at their website.

Forward Face: Video: http://www.forwardface.org/video.html

One of the videos I found there tells the story of a musical called "Let's Face the Music."

"Meet a group of courageous and creative young people, the Inner Faces, who were born with craniofacial differences. Face: A Portrait is a documentary portraying their participation in the creation and production of an off-Broadway theater piece that is also the story of their lives."
http://www.vpw.com/educational/results.asp?SEARCH=HIGH

This video does not appear to be available for purchase at this time, and is only available from the Forward Face website.

Posted by pfa at 10:04 AM | Comments (0)

Introducing Let's Face It at UM

The University of Michigan is proud to announce that the Let's Face It web site is being transferred from the Let's Face It USA organization to UM this month. The Let's Face It web site provides information and resources for persons with facial differences, their friends and family, and clinicians. At the University of Michigan, we hope to enrich and expand the variety of clinical information and resources on the site.

Our Mission:
To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.

Our Vision:
To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

The original "Let's Face It" web site has been at:
http://www.faceit.org/

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. The UM version of the site will be at:
http://www.dent.umich.edu/faceit/