Ehlers-Danlos Toolkit for School Nurses
Disclaimer: This toolkit is intended to provide resources for school nursing practice as it relates
to the care of students with Ehlers-Danlos in Oregon Schools. This is not medical nor nurse
practice advice and is not prescriptive as it relates to individual students or individual nursing
practice. These resources do not override individual assessment, and clinical judgment. Nurses
are responsible for their own assessments and practice.
Disease Description Pertaining to School
Ehlers-Danlos Syndrome (EDS) is a rare hereditary condition involving the connective tissues of
the body (Malfait et al., 2017). It is estimated that 1 in 5000 individuals worldwide are affected
by EDS, but a new study conducted in Wales suggests a higher prevalence (Demmler et al.,
2019). This condition can create joint hypermobility, skin elasticity, and tissue fragility. There
are currently 13 subtypes of EDS, with each subtype having a unique impact on the body
systems (Malfait et al., 2017). Individuals with heritable connective tissue disorders, like EDS,
have reported increased fatigue, pain, disability and decreased general health when compared
to individuals without. It is important to assess the student’s EDS type and individual impact
when identifying accommodations (Warnink-Kavelaars et al., 2021). These symptoms can
greatly impact a student’s ability to access their education and can impact educational gains. It
is crucial to assess each student with EDS individually as health needs and accommodations will
vary.
For a quick summary of the The 2017 international classification of the Ehlers-Danlos
syndromes, please click on the link below. It is important to note that not all criteria are needed
for a diagnosis. For more information on diagnostic criteria, please review the The 2017
international classification of Ehlers-Danlos Syndromes at the link found in the basic disease
information section.
Summary of 13 EDS diagnostic criteria
Ehlers Danlos have a variety of subtypes that impact various systems in the body, most notably
vasculature. Depending on systems impacted, supportive information may be found in the
following toolkits:
● Cardiac
● Seizures
● Bleeding Disorders
Basic Disease Information
For a complete review of the 13 EDS types, please review the following:
Malfait, F., Francomano, C., Byers, P., Belmont, J., Berglund, B., Black, J., Bloom, L.,
Bowen, J. M., Brady, A. F., Burrows, N. P., Castori, M., Cohen, H., Colombi, M., Demirdas,
S., De Backer, J., De Paepe, A., Fournel-Gigleux, S., Frank, M., Ghali, N., … Tinkle, B.
(2017). The 2017 international classification of the ehlers-danlos syndromes. American
Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8–26.
https://doi.org/10.1002/ajmg.c.31552
Legal Practice Standards
At the forefront of nurse case management for school nurses, is the understanding of scope of
practice as it relates to case management and delegation of nursing tasks in a community
setting:
● Oregon State Board of Nursing Oregon Nurse Practice Act
● Oregon Revised Statute ORS 339.866 Self-administration of Medication by Students
● Oregon Administrative Rule OAR 581-021-0037 Administration of Medication
Evidence Based Practice
● Evidence Based Practice Grid
Public Access Resources
Note: the following are national or regional resources that serve as a reference, they may or
may not be consistent with Oregon law and do not supersede Oregon Nurse Practice.
School toolkit for JHS and EDS
A free resource for staff to help support pupils with joint hypermobility syndrome (JHS) or the Ehlers-Danlos syndromes (EDS)
● EDS School Toolkit
Genetic and Rare Diseases Information Center
GARD is a public health program of the National Institutes of Health (NIH), National Center for
Advancing Translational Sciences (NCATS) that provides health information about rare diseases for the public.
● Ehlers-Danlos Syndromes
Go See the Nurse: https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes
● Ehlers-Danlos Syndrome (EDS) – Guide For The School Nurse
Professional Development
Ehlers-Danlos Society
EDS ECHO is a series of educational programs for healthcare professionals across all disciplines
who want to improve their knowledge and ability to care for people with Ehlers-Danlos
Syndrome (EDS).
● Ehlers-Danlos: Project Echo
StatPearls
● Ehlers-Danlos Continuing Education
Ehlers-Danlos Society
● Information for Healthcare Professionals
Chronic Pain Partners
● Ehlers Danlos Syndrome Nursing Education Program
National Institutes of Health
● Miklovic T, Sieg VC. Ehlers-Danlos Syndrome. [Updated 2022 Jun 9]. In: StatPearls
[Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from:
https://www.ncbi.nlm.nih.gov/books/NBK549814/
Osmosis
● Ehlers-Danlos syndrome (Year of the Zebra) (7:57(=)
Templates
The following templates are modifiable for use by school nurses as it relates to their practice
and should be used consistently with Oregon State Board of Nursing, Delegation Laws and local
school policy.
Individualized Health Plans
An individualized health plan is the totality of the plan that includes all applicable procedures
for students with chronic disease. Because these are intended to be individualized, the attached
is an example of a compiled IHP:
● Ehlers-Danlos IHP Template
● Ehlers-Danlos Teacher Notification Template
Authorizations
● Authorization for Specialized Care Template
Prescriber Order Templates
● Prescriber Order Template
Medication Administration and Self-Medication Agreement
● Medication Authorization
504
● Ehlers-Danlos SAMPLE ACCOMODATIONS WITH RATIONALE
Author: Kristiina Gangner
Peer Reviewer: Jan Olson
Editorial Reviewer: Ann Occhi
References
Demmler, J. C., Atkinson, M. D., Reinhold, E. J., Choy, E., Lyons, R. A., & Brophy, S. T.
(2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum
disorder in Wales, UK: A National Electronic Cohort Study and case–control comparison.
BMJ Open, 9(11). https://doi.org/10.1136/bmjopen-2019-031365
Feldman, E. C., Hivick, D. P., Slepian, P. M., Tran, S. T., Chopra, P., & Greenley, R. N.
(2020). Pain Symptomatology and management in pediatric Ehlers–danlos syndrome: A
Review. Children, 7(9), 146. https://doi.org/10.3390/children7090146
Malfait, F., Francomano, C., Byers, P., Belmont, J., Berglund, B., Black, J., Bloom, L.,
Bowen, J. M., Brady, A. F., Burrows, N. P., Castori, M., Cohen, H., Colombi, M., Demirdas,
S., De Backer, J., De Paepe, A., Fournel-Gigleux, S., Frank, M., Ghali, N., … Tinkle, B. (2017).
The 2017 international classification of the ehlers-danlos syndromes. American Journal of
Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8–26.
https://doi.org/10.1002/ajmg.c.31552
Miklovic T, Sieg VC. Ehlers Danlos Syndrome. [Updated 2021 Jul 10]. In: StatPearls
[Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from:
https://www.ncbi.nlm.nih.gov/books/NBK549814/
The Ehlers Danlos Society. (2020, May 28). The types of EDS. The Ehlers Danlos Society.
Retrieved from https://www.ehlers-danlos.com/eds-types/#mEDS
Warnink-Kavelaars, J., de Koning, L., Rombaut, L., Alsem, M., Menke, L., Oosterlaan, J.,
Buizer, A., & Engelbert, R. (2021). Heritable connective tissue disorders in childhood:
Increased fatigue, pain, disability and decreased general health. Genes, 12(6), 831.
https://doi.org/10.3390/genes12060831