AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences University of Nevada, Las Vegas School of Dental Medicine July 18, 2006

Who we are... AboutFace USA is a national organization providing information and support for persons with facial differences and their families. AboutFace USA supports persons whose facial differences are present at birth and those whose facial differences were acquired as a result of illness, disease or trauma. AboutFace USA provides access to a broad range of written and audio-visual resources about various craniofacial conditions. Community-based resources can also be provided to help families adapt to the effects and challenges of living with a craniofacial condition/facial difference. Information on school programs is also available. AboutFace USA provides individuals and families an opportunity to connect with others facing similar challenges.

AboutFace USA is a national organization providing information and support for persons with facial differences and their families.

AboutFace USA supports persons whose facial differences are present at birth and those whose facial differences were acquired as a result of illness, disease or trauma.

AboutFace USA provides access to a broad range of written and audio-visual resources about various craniofacial conditions. Community-based resources can also be provided to help families adapt to the effects and challenges of living with a craniofacial condition/facial difference. Information on school programs is also available.

AboutFace USA provides individuals and families an opportunity to connect with others facing similar challenges.

Who we serve... Individuals Families and Friends Medical professionals Education professionals Community

Individuals

Families and Friends

Medical professionals

Education professionals

Community

What we do... Pathfinder Outreach Network Family-to-Family Connection Websites Newsletter The North American Craniofacial Family Conference (NACFC) We run on volunteer power!

Pathfinder Outreach Network

Family-to-Family Connection

Websites

Newsletter

The North American Craniofacial Family Conference (NACFC)

We run on volunteer power!

Our goals... Support families Emotional support Educational materials Local/regional resources Bridge the gap between families and service providers Strengthen outreach efforts Increase public awareness

Support families

Emotional support

Educational materials

Local/regional resources

Bridge the gap between families and service providers

Strengthen outreach efforts

Increase public awareness

Types of Facial Differences Congenital anomalies Cleft lip and palate Hemifacial Microsomia Apert Syndrome Crouzon Syndrome Other craniofacial conditions Acquired facial differences Burns Trauma Illness and disease

Congenital anomalies

Cleft lip and palate

Hemifacial Microsomia

Apert Syndrome

Crouzon Syndrome

Other craniofacial conditions

Acquired facial differences

Burns

Trauma

Illness and disease

Varying degrees of hearing loss Speech issues 300+ known syndromes Cleft Lip and/or Palate Unilateral or bilateral Feeding issues Multiple reconstructive surgeries

Varying degrees of hearing loss

Speech issues

300+ known syndromes

Unilateral or bilateral

Feeding issues

Multiple reconstructive surgeries

The variant Goldenhar Syndrome also involves anomalies of the eyes and spine Hemifacial Microsomia One-half of the face does not develop, and the other half may be underdeveloped Multiple anomalies can include cardiovascular and respiratory issues

The variant Goldenhar Syndrome also involves anomalies of the eyes and spine

One-half of the face does not develop, and the other half may be underdeveloped

Multiple anomalies can include cardiovascular and respiratory issues

Apert Syndrome Affects the skull, eyes and face Boney fusion of the hands and feet (syndactyly) Occasional hearing loss A small percentage of patients may have cardiovascular, gastrointestinal and respiratory issues Occurs approximately 1 in 65,000 births and is not hereditary

Affects the skull, eyes and face

Boney fusion of the hands and feet (syndactyly)

Occasional hearing loss

A small percentage of patients may have cardiovascular, gastrointestinal and respiratory issues

Occurs approximately 1 in 65,000 births and is not hereditary

Unlike Apert Syndrome, does not usually involve non-craniofacial anomalies Crouzon Syndrome Multiple anomalies include premature fusion of cranial sutures and protruding eyes Crouzon Syndrome is hereditary Mid-face hypoplasia and large mandible corrected by distraction

Unlike Apert Syndrome, does not usually involve non-craniofacial anomalies

Multiple anomalies include premature fusion of cranial sutures and protruding eyes

Crouzon Syndrome is hereditary

Mid-face hypoplasia and large mandible corrected by distraction

Anopthalmus with Frontonasal Dysplasia Other Craniofacial Conditions Velocardiofacial Syndrome (VCFS) 22q.11 deletion, often discovered after an attempt at palate closure Many patients have psychiatric issues Low-frequency anomalies can include spina bifida, juvenile rheumatoid arthritis and growth hormone deficiency (less than 5%) Anopthalmus - eye is underdeveloped or altogether missing; hypertelorism Frontonasal Dysplasia - Rare median facial cleft; missing nasal bones

Anopthalmus with Frontonasal Dysplasia

Velocardiofacial Syndrome (VCFS)

22q.11 deletion, often discovered after an attempt at palate closure

Many patients have psychiatric issues

Low-frequency anomalies can include spina bifida, juvenile rheumatoid arthritis and growth hormone deficiency (less than 5%)

Anopthalmus - eye is underdeveloped or altogether missing; hypertelorism

Frontonasal Dysplasia - Rare median facial cleft; missing nasal bones

Other Craniofacial Conditions Ectodermal Dysplasia Affects the hair, skin, teeth, nails and sweat glands Related anomalies include cleft lip/palate and syndactyly of the hands and feet. Microtia/Atresia Hemangiomas/Port Wine Stains Hemi-hypertrophy Gigantism Congenital Tumors Freeman-Sheldon Syndrome Unspecified Craniofacial Syndromes

Ectodermal Dysplasia

Affects the hair, skin, teeth, nails and sweat glands

Related anomalies include cleft lip/palate and syndactyly of the hands and feet.

Microtia/Atresia

Hemangiomas/Port Wine Stains

Hemi-hypertrophy Gigantism

Congenital Tumors

Freeman-Sheldon Syndrome

Unspecified Craniofacial Syndromes

Acquired Facial Differences Burns Fire and chemical Illness and Disease Oral, Head and Neck Cancers Scleroderma, Vitiligo, Benign Tumors Facial Palsy Trauma Traffic accidents Animal attacks Industrial accidents Combat

Burns

Fire and chemical

Illness and Disease

Oral, Head and Neck Cancers

Scleroderma, Vitiligo, Benign Tumors

Facial Palsy

Trauma

Traffic accidents

Animal attacks

Industrial accidents

Combat

A system of networking families to provide support, information, referrals and social opportunities Not medical professionals Peer counselors Advocates Confidantes Recognized nationally Pathfinder Outreach Network

A system of networking families to provide support, information, referrals and social opportunities

Not medical professionals

Peer counselors

Advocates

Confidantes

Recognized nationally

Types of Outreach One-to-one support Informal support organizations Formal support organizations Educational outreach We do not establish traditional support groups...we are a support network !

One-to-one support

Informal support organizations

Formal support organizations

Educational outreach

We do not establish traditional support groups...we are a support network !

Brushing and flossing Good nutrition Regular check-ups Innovative treatments General dentistry and specialties Media emphasis on appearance The Path to Good Oral Health

Brushing and flossing

Good nutrition

Regular check-ups

Innovative treatments

General dentistry and specialties

Media emphasis on appearance

"Oral health is essential to the general health of all Americans and can be achieved. However, all Americans are not able to take that to heart." NIDCR director Dr. Lawrence Tabak, C iting 2000 Surgeon General’s Report Healthcare Disparities...

"Oral health is essential to the general health of all Americans and can be achieved. However, all Americans are not able to take that to heart."

NIDCR director Dr. Lawrence Tabak,

C iting 2000 Surgeon General’s Report

Oral hygiene General fear of dental procedures Lack of insurance or other coverage Common Roadblocks

Oral hygiene

General fear of dental procedures

Lack of insurance or other coverage

Patients with craniofacial anomalies Some patients fear all or most medical professionals and facilities Treating the senses Lack of access to basic services Medical financing – CYSHCN, CHIP Geography Few professionals specializing in special needs dentistry Additional Roadblocks

Patients with craniofacial anomalies

Some patients fear all or most medical professionals and facilities

Treating the senses

Lack of access to basic services

Medical financing – CYSHCN, CHIP

Geography

Few professionals specializing in special needs dentistry

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. The Institute for Family-Centered Care Family-Centered Care

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting.

The Institute for Family-Centered Care

Respecting each patient and his or her family Sharing complete and unbiased information with the patient and family in a timely manner Supporting and facilitating choice for the patient and family about approaches to care and support Recognizing that patient and family knowledge, values, beliefs and cultural backgrounds affect the planning and delivery of care Recognizing and building on the strengths of each patient and family, even in difficult and challenging situations Ensuring flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each patient and family In Real-Life Terms

Respecting each patient and his or her family

Sharing complete and unbiased information with the patient and family in a timely manner

Supporting and facilitating choice for the patient and family about approaches to care and support

Recognizing that patient and family knowledge, values, beliefs and cultural backgrounds affect the planning and delivery of care

Recognizing and building on the strengths of each patient and family, even in difficult and challenging situations

Ensuring flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each patient and family

When treating patients with craniofacial conditions... Understand your patient’s condition Address your patient directly Educate your patient about all procedures and the overall treatment plan made in conjunction with their team Educate your staff Patient-Centered Care

When treating patients with craniofacial conditions...

Understand your patient’s condition

Address your patient directly

Educate your patient about all procedures and the overall treatment plan made in conjunction with their team

Educate your staff

Persons with facial differences, not... Cleft-affected, cleft lip/palate child, craniofacial person Deformed Harelip Congenital or birth anomalies or differences, not... Birth defects Survivors, not... Victims Avoid the phrase “suffering from”! Advocacy page, cleftAdvocate website www.cleftadvocate.org/advocacy.html Person-first Language

Persons with facial differences, not...

Cleft-affected, cleft lip/palate child, craniofacial person

Deformed

Harelip

Congenital or birth anomalies or differences, not...

Birth defects

Survivors, not...

Victims

Avoid the phrase “suffering from”!

Advocacy page, cleftAdvocate website

www.cleftadvocate.org/advocacy.html

Make appropriate referrals Interface with cleft/craniofacial team HIPAA Follow-up with family Involving the Family

Make appropriate referrals

Interface with cleft/craniofacial team

HIPAA

Follow-up with family

Resiliency Individual Family Embracing differences When is enough surgery or treatment enough? Blessings in disguise Focus on...

Resiliency

Individual

Family

Embracing differences

When is enough surgery or treatment enough?

Blessings in disguise

Working Together Family Neighborhood Partners in Care (NPiC) Craniofacial Team

Neighborhood Partners in Care (NPiCs) Provide front-line care Interface directly with the craniofacial team Follow the care plan laid out by the team Neighborhood Partners in Care

Neighborhood Partners in Care (NPiCs)

Provide front-line care

Interface directly with the craniofacial team

Follow the care plan laid out by the team

Financial issues and systems Day-to-day living CHSCH and other programs Employment FMLA Insurance Community Transportation Respite Youth in Transition More interested in financial and social independence than medical issues Other Challenges

Financial issues and systems

Day-to-day living

CHSCH and other programs

Employment

FMLA

Insurance

Community

Transportation

Respite

Youth in Transition

More interested in financial and social independence than medical issues

Tolerance? The capacity for or the practice of recognizing and respecting the beliefs or practices of others Acceptance React favorably to; consider right and proper Admit into a group or community Patients need to feel respected and protected, but not pitied Tolerance vs. Acceptance

Tolerance?

The capacity for or the practice of recognizing and respecting the beliefs or practices of others

Acceptance

React favorably to; consider right and proper

Admit into a group or community

Patients need to feel respected and protected, but not pitied

Pediatric dentistry Orthodontics Prosthodontics Restorative dentistry Maxillofacial Surgery Specialties

Pediatric dentistry

Orthodontics

Prosthodontics

Restorative dentistry

Maxillofacial Surgery

Access to the ACPA Journal Discounted student memberships Free registration to annual conference (Colorado in 2007) Become an ACPA Member!

Access to the ACPA Journal

Discounted student memberships

Free registration to annual conference (Colorado in 2007)

We provide... Educational resources for families and professionals A roadmap to medical and social services Referrals to outreach volunteers and other support organizations Strict confidentially Make the referral! How we can help...

We provide...

Educational resources for families and professionals

A roadmap to medical and social services

Referrals to outreach volunteers and other support organizations

Strict confidentially

Make the referral!

American Cleft Palate-Craniofacial Association (ACPA) Parameters of Care http://www.acpa-cpf.org/teamcare/parameters.htm American Cleft Palate-Craniofacial Association (ACPA) Student Training http://www.acpa-cpf.org/train/ American Dental Association - Special Needs Dentistry Information http://www.ada.org/public/topics/special_needs.asp Internal Maxillary Distraction http://www.klsmartinusa.com/MOD-line/zurich_max.htm Bone Morphogenic Protein http://iadr.confex.com/iadr/2004Hawaii/techprogram/abstract_45918.htm Resources

American Cleft Palate-Craniofacial Association (ACPA) Parameters of Care

http://www.acpa-cpf.org/teamcare/parameters.htm

American Cleft Palate-Craniofacial Association (ACPA) Student Training

http://www.acpa-cpf.org/train/

American Dental Association - Special Needs Dentistry Information

http://www.ada.org/public/topics/special_needs.asp

Internal Maxillary Distraction

http://www.klsmartinusa.com/MOD-line/zurich_max.htm

Bone Morphogenic Protein

http://iadr.confex.com/iadr/2004Hawaii/techprogram/abstract_45918.htm

AboutFace USA www.aboutfaceusa.org cleftAdvocate www.cleftadvocate.org Apert International www.apert.org Goldenhar/HFM Network www.goldenharsyndrome.org Crouzon Support Network www.crouzonsupport.org Velocardiofacial/22q Support http://www.vcfsef.org National Foundation for Ectodermal Dysplasia http://www.nfed.org The Phoenix Society www.phoenix-society.org National Institute for Dental and Craniofacial Research www.nidcr.nih.gov Resources

AboutFace USA

www.aboutfaceusa.org

cleftAdvocate

www.cleftadvocate.org

Apert International

www.apert.org

Goldenhar/HFM Network

www.goldenharsyndrome.org

Crouzon Support Network

www.crouzonsupport.org

Velocardiofacial/22q Support

http://www.vcfsef.org

National Foundation for Ectodermal Dysplasia

http://www.nfed.org

The Phoenix Society

www.phoenix-society.org

National Institute for Dental and Craniofacial Research

www.nidcr.nih.gov

Join us at the NACFC! 2006 North American Craniofacial Family Conference (NACFC) Monday, July 24 Keynote Speaker Thomas Hart, DDS, PhD Facial Imaging as a Diagnostic Tool Continental Breakfast and Keynote - $25 for students

2006 North American Craniofacial Family Conference (NACFC)

Monday, July 24

Keynote Speaker Thomas Hart, DDS, PhD

Facial Imaging as a Diagnostic Tool

Continental Breakfast and Keynote - $25 for students

AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences University of Nevada, Las Vegas School of Dental Medicine July 18, 2006