NAME ______DATE ______PERIOD ______

PHYSICIANLET.WKT

PHYSICIAN’S LETTER TO PARENTS: GENETIC DISORDER/BIRTH DEFECT

In this activity you will serve as a genetic counselor for a couple that has learned that they will be having a child with a genetic disorder or birth defect. You will investigate one genetic disorder and share your information with the expectant parents in the form of a professional letter. Listed below are the requirements of the letter which should be between 1-2 pages long.

1) Must be in standard letter format

Proper Heading (2) ______

Proper Greeting (2) ______

Three Paragraphs in Body (3)______

Closing and Signature (2) ______

2) Body Paragraph 1 Should Include:

·  If the disorder was inherited, how was it inherited?

·  What chromosome is involved (books and posters are available for this)

·  The cause of the disorder (non-disjunction, deletion, unknown, etc)

·  The frequency of the disorder in the general population

·  Populations/risk groups for the disorder (if any) such as gender, races, ethnicities, religious groups.

(5) ______

3) Body Paragraph 2 Should Include:

·  Symptoms of the Disorder

·  How the disorder affects the child’s life (physically, mentally, socially)

·  The expected lifespan of the child

(4) ______

4) Body Paragraph 3 Should Include:

·  Advice for the parents on raising the child so that

he/she leads a productive life

(4) ______

References

·  minimum of two in proper format on a separate page

(6) ______

TOTAL (28) ______

GENETIC DISORDERS AND BIRTH DEFECTS

ACHONDROPLASIA MAPLE SYRUP URINE DISEASE PHENYLKETONURIA

AMYOTROPHIC LATERAL SCLEROSIS FRIEDREICH'S ATAXIA

NEUROFIBROMATOSIS

GALACTOSEMIA WILSON'S DISEASE GILBERT’S SYNDROME

OSTEOGENESIS IMPERFECTA TOURETTE SYNDROME FRAGILE X SYNDROME

CRI-DU-CHAT SYNDROME PRADER-WILLI SYNDROME NIEMANN PICK DISEASE

FABRY'S DISEASE EHLERS-DANLOS SYNDROME RETT SYNDROME

MARFAN SYNDROME ALBINISM ALPHA 1 ANTITRYPSIN DEFICIENCY

EDWARD SYNDROME (TRISOMY 18) PATAU SYNDROME (TRISOMY 13)

SPINA BIFIDA GAUCHER DISEASE LESCH-NYHAN DISEASE

RETINOBLASTOMA XERODERMA PIGMENTOSUM ANGELMAN SYNDROME

WOLF-HIRSCHHORN SYNDROME SOTOS SYNDROME ALZHEIMER’S DISEASE

LUPUS WILLIAMS SYNDROME NAIL PATELLA SYNDROME FANCONI ANEMIA

SUGGESTED RESOURCES:

Wynbrandt, James and Mark D. Ludman. The Encyclopedia of Genetic Disorders and Birth Defects New York: Facts on File, Inc., 1991. (Esperanza and Yorba Linda Libraries; ALL DISEASES/DISORDERS ABOVE ARE IN THIS REFERENCE BOOK

These books are available in my classroom for your use before and after school:

Cummings, Michael. Human Heredity: Principles and Issues

Belmont: Wadsworth Publishing Company, 1997

Hartl Daniel L. and Elizabeth W. Jones. Genetics: Analysis of Genes and Genomes, Sixth Edition. Sudbury: Jones and Bartlett, Inc., 2005.

Lewis Ricki. Human Genetics: Concepts and Applications, Sixth Edition.

New York: McGraw-Hill, Inc. 2005.

SUGGESTED WEB SITES:

A “foundation” website or one by a university is more reliable than one made by a family member of an individual with the disease/disorder. Ex: Cystic Fibrosis Foundation

Alphabetical List of Specific Diseases/Disorders from the Karolinska Institute:

Online Mendelian Inheritance in Man (OMIM):

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

Genetic Alliance: http://www.geneticalliance.org

National Organization for Rare Disorders, Inc. (NORD) http://www.rarediseases.org

March of Dimes: http://www.modimes.org

Exceptional Parent: http://www.eparent.com


Human Genome Project Information:

http://www.ornl.gov/TechResources/Human_Genome

Med Help International – The Patient Medical Information Center:

http://www.medhelp.org

Genetic Science Learning Center:

http://gslc.genetics.utah.edu