Please note that the Health Libraries will be
closed for the
Jubilee bank holidays 2nd & 3rd June (2022) to celebrate the Queen's
platinum jubilee. Online resources are available via the Health Library website
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.
·
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:
KnowledgeShare Evidence Updates is
a personalised current awareness service which sends, straight to your email
inbox, new evidence on topics tailored to your requirements and collated
by Health Librarians.
For more information, or to register for KnowledgeShare please go to https://www.keele.ac.uk/healthlibrary/find/currentawareness/.
J
Closure of Healthcare Databases Advanced Search interface 31 March 2022
This is to inform you of the closure of the Healthcare Databases Advanced Search (HDAS) on 31st March 2022.
From 1st April 2022 onwards:
- You will not be able to access or use HDAS.
- Any alerts saved in HDAS will
stop running and stop sending results to you.
- All search strategies and
search results saved in HDAS will be deleted.
- You will only be able to perform advanced searches on the bibliographic databases (such as Medline and CINAHL) using the database provider websites run by OVID, ProQuest and EBSCO.
So that you can prepare for the closure please visit our HDAS closure page for information on the services that you can use to search the literature, now and in the future, and on the steps you need to take to export saved searches from HDAS.
If
you need further help moving from HDAS to provider interfaces, please contact the library team.
Do
look at HEE’s NHS Knowledge and
Library Hub, a new national search interface for all NHS-funded digital
knowledge resources including journals and books, which also includes links to
all the database provider websites.
Library refurbishment
We are continuing with our refurbishment of the library,
Downstairs of the library is open for self study whilst lighting works continue upstairs please take care to avoid scaffolding in the entranceway.
Facilities will remain open for those with 24/7access
Library refurbishment - further works
Happy New Year!
We are continuing with our refurbishment of the library. Over the next couple of weeks we have work continuing to replace and update the lighting throughout the library. As well as improving the light it will also be safer, with new emergency lighting and sensors so it won't be totally dark if coming into the library in the evenings.
In the meantime there will be a bit of disruption whilst the works are carried out. From Tuesday, downstairs will be inaccessible for the rest of the week this means that there will be no browsing of the bookstock but access to computers and study space remain available upstairs. It you do require books from the shelves please contact library staff and we will do our best to get them for you library@uhnm.nhs.uk x2913
At the end of the week (Thursday and Friday) we will also be having some work done on the stairwells which may further complicate matters so you may want to ring ahead of a visit to check you can access the facilities you need.
The Health Library at Stoke remains open as usual.
Health Library at County Library Christmas Opening
We are pleased to announce that the Health Library at County is now open again following phase 1 of our refurbishment. Staff will be on hand to help until 4.30pm on Thursday 23rd December. After that the library will be self-service over Christmas for those with 24/7 access with swipecard at the side entrance. Normal service will resume on Tuesday 4th January when the PGMC will also reopen.
Information on opening hours over the Christmas and New Year period at the Health Library (CEC) Royal Stoke can be found on the Health Library webpages https://www.keele.ac.uk/healthlibrary/openinghours/christmasopeninghours/
Merry Christmas
from
The Library Team
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