TY - JOUR
T1 - Thundering hoofbeats and dazzling zebras
T2 - A model integrating current rare disease perspectives in paleopathology
AU - Cormier, Aviva A.
AU - Buikstra, Jane E.
N1 - Funding Information:
Acknowledgements to The Center for American Archeology and the Illinois State Museum for facilitating this research and to Amanda Wissler for database assistance. Many thanks to other fellows at Brown University's Cogut Institute for the Humanities for feedback on an early draft.
Publisher Copyright:
© 2021 Elsevier Inc.
PY - 2021/6
Y1 - 2021/6
N2 - Objective: The article reviews the study of rare diseases and their nomenclature, emerging government policies and initiatives, and the concerns voiced by the modern rare disease communities. An interpretive model is then presented for the bioarchaeological interpretations of individuals with paleopathological evidence of rare diseases. Materials: In demonstration of the application of the proposed framework, we evaluate the skeletal remains of an adult female (EZ 3-7-1) excavated in the 1980s from the Middle Woodland (50BCE–CE400) context of the Elizabeth site (11PK512) in the lower Illinois Valley, USA. Methods: We use macroscopic examination methods, as well as cementochronology, to put forth the osteobiographical profile. Results: The skeletal manifestations observed suggests limitations of major life activities, which would have increased in severity throughout the life course of EZ 3-7-1. Conclusions: The study of EZ 3-7-1 demonstrates how an osteobiography, centering on the lived experiences and limitations throughout a life course, can allow for a deeper appreciation for life in the past. Significance: By considering the perspectives of the modern rare disease community in the bioarchaeological methodology, research can include the nuanced impacts of the disease on life experiences and varying societal perceptions and attitudes, as well as raising awareness and advancing contemporary perspectives on impairment and disability. Limitations: Without ample contextual evidence, there are limitations in making conclusions regarding social identity and disability. Suggestions for further research: This framework should be applied to other rare diseases in a variety of contexts to further test its functionality.
AB - Objective: The article reviews the study of rare diseases and their nomenclature, emerging government policies and initiatives, and the concerns voiced by the modern rare disease communities. An interpretive model is then presented for the bioarchaeological interpretations of individuals with paleopathological evidence of rare diseases. Materials: In demonstration of the application of the proposed framework, we evaluate the skeletal remains of an adult female (EZ 3-7-1) excavated in the 1980s from the Middle Woodland (50BCE–CE400) context of the Elizabeth site (11PK512) in the lower Illinois Valley, USA. Methods: We use macroscopic examination methods, as well as cementochronology, to put forth the osteobiographical profile. Results: The skeletal manifestations observed suggests limitations of major life activities, which would have increased in severity throughout the life course of EZ 3-7-1. Conclusions: The study of EZ 3-7-1 demonstrates how an osteobiography, centering on the lived experiences and limitations throughout a life course, can allow for a deeper appreciation for life in the past. Significance: By considering the perspectives of the modern rare disease community in the bioarchaeological methodology, research can include the nuanced impacts of the disease on life experiences and varying societal perceptions and attitudes, as well as raising awareness and advancing contemporary perspectives on impairment and disability. Limitations: Without ample contextual evidence, there are limitations in making conclusions regarding social identity and disability. Suggestions for further research: This framework should be applied to other rare diseases in a variety of contexts to further test its functionality.
KW - Achondroplasia
KW - Combined skeletal dysplasia
KW - Leri-Weill dyschondrosteosis
KW - Paleopathology
KW - Rare disease
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U2 - 10.1016/j.ijpp.2021.04.010
DO - 10.1016/j.ijpp.2021.04.010
M3 - Article
C2 - 33984627
AN - SCOPUS:85108387034
SN - 1879-9817
VL - 33
SP - 196
EP - 208
JO - International Journal of Paleopathology
JF - International Journal of Paleopathology
ER -