Ehlers-Danlos Syndromes Awareness Month – May 2022

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.

BOOKS:

• A guide to living with Ehlers-Danlos syndrome (hypermobility type) : bending without breaking / Knight, Isobel; Hakim, Alan 2015 2^nd 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 4^th edition [Oxford: Oxford University Press, Incorporated]. Ebook also available.

• Rheumatology secrets / West, Sterling G., 1950-; Kolfenbach, Jason R; 2020 4^th edition [Philadelphia : Elsevier] – Keele ebook. 3^rd edition also available in print.

• Oxford handbook of rheumatology / Clunie, Gavin.; Wilkinson, Nick; Nikiphorou, Elena; Jadon, Deepak; 2018 4^th 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/

JOURNAL ARTICLES:

• 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

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