Cornelia de Lange Syndrome - Kathryn W. Davis Global ... provide awareness about a congenital...
Transcript of Cornelia de Lange Syndrome - Kathryn W. Davis Global ... provide awareness about a congenital...
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Kathryn W. Davis Global Community Scholarship
Community Service Project
Cornelia de Lange Syndrome Awareness
By Ingrid Barone and Siobhan Devaney
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To provide awareness about a congenital syndrome called Cornelia de Lange Syndrome to future and practicing health care professionals at Westchester Community College. It is our hope that with this information they will someday make a difference with the identification of an individual or in the care of a patient with CdLS. We encourage them to carry this information into their professions and share it with fellow health care professionals.
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Classroom presentations about CdLS to all current nursing students at WCC.
General awareness to student and faculty body.
Awareness to pediatric clinical Nurse Practictioners in the hospital setting.
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Congenital syndrome
Caused by a genetic mutation
Occurs in 1 in 10,000 live births
Named after a Dutch pediatrician in 1933
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Long eyelashes
Synophrys: eyebrows that meet in the middle.
Short nose, broad or depressed nasal bridge
Low set ears
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Small stature
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Developmental delays
Mental retardation
Learning disabilities QuickTim e™ and a
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Obsessive compulsive characteristics
Anxiety
Self injurious behavior
Aggression
Autistic like features
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QuickTime™ and a decompres sor
are needed to see this p icture.
Reduction defects with absent forearms
Scoliosis
Curved fifth finger
Small hands and feet
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Developmental delays
Heart defects
Gastro-esophageal reflux disease
Bowel abnormalities
Feeding difficulty
Hearing & speech problems
Seizures
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Awareness of CdLS
Assessment and plan of care
Sensitivity and support towards family
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The grieving process
Constant caretaking
Many challenges
Financial
Marital
Social isolation
Siblings
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Founded in 1981.
Mission is to ensure early and accurate diagnosis.
Reaching Out Newsletter
Connect with other families.
Promotes research.
Info for professionals.
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An estimated 20,000 individuals remain undiagnosed or without services in the USA.
Volunteers across the nation work to raise awareness in their community, among professionals and in the media.
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Powerpoint presentation to LPN and RN nursing students during classroom lecture time which focused on diagnosis, manifestations and nursing implications.
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Students and faculty responded to presentation with interest and eagerness to learn more.
Active discussion followed after each presentation.
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Information to nurse educators.
Incorporation of our CdLS powerpoint presentation into future RN lectures at WCC.
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Provide awareness to pediatric Nurse Practitioner at Westchester Medical Center.
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April 2009: WCC Health Fair in the student resource center.
CdLS Awareness table with handouts, powerpoint display and CdLS foundation information.
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Active dialogue and Q&A with students, faculty and campus employees.
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CdLS Foundation, Inc. 800-753-2357
302 West Main St., #100 [email protected]
Avon, CT 06001 www.CdLSusa.org