Ehlers-Danlos syndromes (EDS) are a
group of rare inherited conditions that affect connective tissue. Connective
tissues provide support in skin, tendons, ligaments, blood vessels, internal organs
and bones.
The Ehlers-Danlos syndromes are
currently classified into thirteen types. In all but the hypermobile subtype
(hEDS) genetics variants have been identified as the cause for the disorder and
are part of the diagnostic criteria. Hypermobile Ehlers-Danlos syndrome (hEDS),
which used to be known as the hypermobility type or type 3, is thought to be
the most common genetic connective tissue disorder.
EDS affects people in different ways.
Some people experience the condition on a mild basis, while for some the
symptoms are disabling.
Ehlers-Danlos Support UK (EDS UK) was
set up in 1987 to support, advise and inform those living with the
Ehlers-Danlos syndromes. Over 30 years
later, we are the largest UK charity that exclusively represents and supports
people with all types of EDS. This May, the team at Ehlers-Danlos Support UK
(EDSUK) are encouraging people to take part in their Dazzle Walk in order to
raise funds and awareness for Ehlers-Danlos Syndromes.
For more information surrounding
Ehlers-Danlos Syndromes, please visit the Ehlers-Danlos Support UK, The
Ehlers-Danlos Society and NHS websites:
https://www.ehlers-danlos.org/
https://www.ehlers-danlos.com/
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
RELATED
LIBRARY RESOURCES
For anyone studying the importance of
improving both the awareness and knowledge of Ehlers-Danlos Syndromes and also
supporting those who have been diagnosed and are living with Ehlers-Danlos
Syndromes, the Health Libraries both at the Royal Stoke and County Hospitals
offer numerous resources related to the subject. In the lists below you’ll find
a variety of items as well as information on materials recently added to our
collection and available periodicals. To locate these items, simply go to our
online catalogue or ask at the counter.
This document
covers the following resources – books, journals, journal articles and patient information.
·
A
guide to living with Ehlers-Danlos syndrome (hypermobility type) : bending
without breaking / Knight, Isobel; Hakim, Alan 2015 2nd edition [London
: Singing Dragon]
·
Clinical rheumatology / Handa, Rohini; 2020 [Singapore :
Springer]
·
Hypermobility syndrome: recognition and
management for therapists / Keer, Rosemary; Grahame, Rodney; 2003 [Edinburgh: Butterworth
Heinemann]
·
The complexity of adolescent obesity :
causes, correlates, and consequences / Vash, Peter; 2015 [Waretown, NJ : Apple Academic
Press, Inc.]. Ebook also available.
·
Oxford Textbook of Rheumatology / Watts, Richard A ; Conaghan, Philip G ;
Denton, Christopher ; Foster, Helen ; Isaacs, John ; Müller-Ladner, Ulf; 2013 4th
edition [Oxford: Oxford University Press, Incorporated]. Ebook also available.
·
Rheumatology secrets / West, Sterling G., 1950-; Kolfenbach,
Jason R; 2020 4th edition [Philadelphia : Elsevier] – Keele ebook. 3rd
edition also available in print.
·
Oxford handbook of rheumatology / Clunie, Gavin.; Wilkinson, Nick;
Nikiphorou, Elena; Jadon, Deepak; 2018 4th edition [New York :
Oxford University Press]. Ebook also available.
JOURNALS:
·
Rheumatology / Oxford: Oxford University Press.
[Available as a Keele ejournal 1999 onwards, and in print 1999 - 2012.]
·
ACR Open Rheumatology / Wiley. [Available as a Keele and NHS
ejournal, & Open Access 2019 onwards.]
·
Rheumatology Advances in Practice / Oxford University Press. [Available as a Keele
and NHS ejournal, & Open Access 2017 onwards.]
·
Clinical rheumatology / London : Springer London. [Available as a Keele
and NHS ejournal 1999 onwards].
·
British journal of rheumatology / Oxford: Oxford University Press.
[Available as a Keele ejournal 1995 onwards & as a NHS ejournal 1994 -
1998].
·
Frontiers in human neuroscience / Lausanne, Switzerland
: Frontiers Research Foundation. [Available as a Keele and NHS
ejournal, & Open Access 2008 onwards.]
·
New England Journal of Medicine / Massachusetts Medical Society. [Available
in print 1984 – 2013; and as a Keele & NHS ejournal 1980 onwards]
·
Orphanet Journal of Rare Diseases / London : BioMed Central [Available as
Keele & NHS ejournal and Open Access 2008 – present]
Access more journals via our Journals webpage: http://www.keele.ac.uk/healthlibrary/find/journals/
·
Simmonds, Jane V et
al.; “Exercise beliefs and behaviours of individuals with Joint Hypermobility
syndrome/Ehlers-Danlos syndrome - hypermobility type”, Disability and rehabilitation 2019 Vol.41 Pt.4, pp.445-455. [Available via Keele ejournals.]
·
Tinkle, Brad et al.,
“Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and
Ehlers–Danlos syndrome hypermobility type): Clinical description and natural
history”; American Journal of Medical
Genetics. Part C, Seminars in Medical Genetics 2017 Vol.175 Pt1 Pp.48-69. [Available via Keele ejournals.]
·
Amel Karaa and Joan
M. Stoler, “Case Report - Ehlers Danlos Syndrome: An Unusual Presentation You
Need to Know about”; Case Reports in Pediatrics Volume 2013,
DOI: 10.1155/2013/764659. [Available via NHS and Keele ejournals, & Open
Access.]
·
Palmer, Shea et al., “The effectiveness of
conservative interventions for the management of syndromic hypermobility: a
systematic literature review”; Clinical
Rheumatology 2021 Vol. 40 Pt.3 pp.1113–1129. [Available via NHS and Keele
ejournals.]
·
Hakim AJ; Tinkle BT;
Francomano CA, “Ehlers-Danlos syndromes, hypermobility spectrum disorders,
and associated co-morbidities: Reports from EDS ECHO.”, American journal of medical genetics. Part
C, Seminars in medical genetics, 2021 December, Vol. 187, Pt. 4, pp.
413-415. [Available via
NHS and Keele ejournals.]
·
Baeza-Velasco C., “Neurodevelopmental atypisms in
the context of joint hypermobility, hypermobility spectrum disorders, and
Ehlers-Danlos syndromes.” American
journal of medical genetics Part C, Seminars in medical genetics, 2021,
Vol. 187, Pt. 4, pp. 491-499. doi:10.1002/ajmg.c.31946 . [Available via NHS and
Keele ejournals.]
·
Dupuy EG,
Leconte P., “Ehlers-Danlos Syndrome, Hypermobility Type: Impact of Somatosensory
Orthoses on Postural Control (A Pilot Study).”, Frontiers in Human Neuroscience. 2017, Vol. 11, June.
doi:10.3389/fnhum.2017.00283 .
[Available via NHS and Keele ejournals, & Open Access.]
·
Chohan, K. et
al., “A review of respiratory manifestations and their management in
Ehlers-Danlos syndromes and hypermobility spectrum disorders.” Chronic
respiratory disease, 2021, Vol.18,
14799731211025313. doi:10.1177/14799731211025313. [Available via NHS and Keele ejournals, & Open
Access.]
& Erratum - (2022). Chronic respiratory disease, Vol.
19,
doi:10.1177/14799731211049699
·
Savasta S. et
al. “Ehlers-Danlos syndrome and neurological features: a review.”, Child’s nervous system : ChNS : official
journal of the International Society for Pediatric Neurosurgery. 2011, Vol.
27, Pt. 3, pp.365-371. doi:10.1007/s00381-010-1256-1. [Available via NHS and Keele ejournals]
·
Sobey G., “Ehlers-Danlos syndrome: how to
diagnose and when to perform genetic tests.”, Archives of Disease in Childhood, 2015, January, Vol. 100, Pt. 1,
pp.57-61. doi: 10.1136/archdischild-2013-304822. [Available
via NHS and Keele ejournals, & Open Access.]
·
Molander, P., et
al., “Ehlers-Danlos Syndrome and Hypermobility Syndrome Compared with Other
Common Chronic Pain Diagnoses-A Study from the Swedish Quality Registry for
Pain Rehabilitation.”, Journal of
Clinical Medicine, 2020, July, Vol. 9, Pt. 7, p.2143. doi:
10.3390/jcm9072143. [Available via NHS
and Keele ejournals, & Open Access.]
·
Bennett S.E. et
al., “Understanding the psychosocial impact of joint hypermobility
syndrome and Ehlers-Danlos syndrome hypermobility type: a qualitative interview
study.”, Disability and Rehabilitation,
2021 Mar;43(6):795-804. doi: 10.1080/09638288.2019.1641848. Epub 2019 Jul 18.
PMID: 31318301. [Available via Keele ejournals, & Open
Access.]
·
Castori, Marco et
al., “Quality of life in the classic and
hypermobility types of Elhers-Danlos syndrome”, Annals of neurology, 2010, Vol.67, Pt.1,
pp.145-146, [Available via Keele ejournals]
PATIENT
INFORMARION / PATIENT ADVICE:
·
NHS
website - https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
·
EDS Ehlers-Danlos
Support UK https://www.ehlers-danlos.org/
-
Living with EDS - https://www.ehlers-danlos.org/what-is-eds/information-on-eds/living-with-eds/
·
The Elhers-Danlos
Society https://www.ehlers-danlos.com/
-
What
are the Elhers-Danlos syndromes? https://www.ehlers-danlos.com/what-is-eds/
·
NORD
– Elhers-Danlos syndrome https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
·
Mind
Body EDS - https://www.mindbodyeds.org.uk/
-
What are the
Ehlers-Danlos Syndromes? https://www.mindbodyeds.org.uk/what-we-do
·
Hypermobility
Syndromes Association – Types of hypermobility https://www.hypermobility.org/types-of-hms
-
Living with
hypermobility syndromes https://www.hypermobility.org/living-with-hypermobility-syndromes
-
Ehlers-Danlos Syndromes
https://www.hypermobility.org/ehlers-danlos
KnowledgeShare CURRENT AWARENESS:
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