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1

P, Barabas A., and Ehlers-Danos Support Group, eds. Ehlers-Danlos syndrome. Farnham: Ehlers-Danlos Support Group, 2003.

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2

P, Barabas A., and Ehlers-Danos Support Group, eds. Ehlers-Danlos syndrome. Richmond: Ehlers-Danlos Support Group, 1995.

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3

Luttkus, Andreas, ed. Das Ehlers-Danlos-Syndrom. Berlin, New York: DE GRUYTER, 2011. http://dx.doi.org/10.1515/9783110249569.

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4

Sturm, Karina, Helena Jung, and Andrea Maier. Ratgeber Ehlers-Danlos-Syndrome. Berlin, Heidelberg: Springer Berlin Heidelberg, 2022. http://dx.doi.org/10.1007/978-3-662-65041-7.

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5

Luttkus, Andreas. Das Ehlers-Danlos-Syndrom: Eine interdisziplinäre Herausforderung. Berlin: de Gruyter, 2011.

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6

Parker, James N., and Philip M. Parker. The official patient's sourcebook on Ehlers-Danlos syndrome. San Diego, Calif: Icon Health Publications, 2002.

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7

Tinkle, Brad T. Issues and management of joint hypermobility: A guide for the Ehlers-Danlos syndrome hypermobility type and the hypermobility syndrome. Greens Fork, IN: Left Paw Press, 2008.

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8

Parker, James N., and Philip M. Parker. Ehlers-Danlos syndrome: A bibliography and dictionary for physicians, patients, and genome researchers [to internet references]. San Diego, CA: ICON Health Publications, 2007.

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9

Knight, Isobel. A guide to living with hypermobility syndrome: Bending without breaking. London: Singing Dragon, 2011.

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10

Luttkus, Andreas, ed. Das Ehlers-Danlos-Syndrom. De Gruyter, 2018. http://dx.doi.org/10.1515/9783110474909.

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11

Isabelle, Annie. Unique Ehlers-Danlos Syndrome: All You Need to Know about Ehlers-Danlos Syndrome. Independently Published, 2022.

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12

Graham, Betty I. Slack!: Ehlers-Danlos Syndrome Explained. Independently Published, 2022.

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13

Hunter, Claire. Exercise with Ehlers Danlos Syndrome. Lulu Press, Inc., 2020.

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14

Luttkus, Andreas. Ehlers-Danlos-Syndrom: Eine Interdisziplinäre Herausforderung. de Gruyter GmbH, Walter, 2017.

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15

Luttkus, Andreas. Ehlers-Danlos-Syndrom: Eine Interdisziplinäre Herausforderung. de Gruyter GmbH, Walter, 2011.

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16

Luttkus, Andreas. Ehlers-Danlos-Syndrom: Eine Interdisziplinäre Herausforderung. de Gruyter GmbH, Walter, 2017.

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17

Luttkus, Andreas. Ehlers-Danlos-Syndrom: Eine Interdisziplinäre Herausforderung. de Gruyter GmbH, Walter, 2017.

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18

Ehlers-Danlos Syndrome: Medical and Practical Information. Signquest Pub, 1997.

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19

Ehlers-Danlos Syndrome Diet and Cookbook: 100+ Quick and Easy Recipes to Prevention, Treat and Manage Ehlers Danlos Syndrome. Independently Published, 2022.

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20

Sturm, Karina, Helena Jung, and Andrea Maier. Ratgeber Ehlers-Danlos-Syndrome: Komplexe Bindegewebserkrankungen Einfach Erklärt. Springer Berlin / Heidelberg, 2022.

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21

LINDA. Fuck Ehlers-Danlos Syndrome EDS Awareness Zebra Ribbon. Independently Published, 2022.

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22

Sybert, Virginia P. Disorders of the Dermis. Oxford University Press, 2012. http://dx.doi.org/10.1093/med/9780195397666.003.0005.

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Collagen – Ainhum – Amniotic Bands – Buschke-Ollendorff Syndrome – Dermatosparaxis – Ehlers-Danlos Syndromes – Ehlers-Danlos Types I, II, and III – Ehlers-Danlos Type IV – Ehlers-Danlos Type VI – Ehlers-Danlos Type VIII – Reactive Perforating Collagenosis – Elastin – Costello Syndrome – Cutis Laxa – Pseudoxanthoma Elasticum – Vascular – Ataxia Telangiectasia – Blue Rubber Bleb Nevus Syndrome – Cutis Marmorata Telangiectatica Congenita – Fabry Syndrome – Familial Flame Nevi – Hereditary Glomus Tumors – Hereditary Hemorrhagic Telangiectasia – Klippel-Trenaunay-Weber Syndrome – Maffucci Syndrome – Sturge-Weber Syndrome – Mixed – Aplasia Cutis Congenita – Focal Dermal Hypoplasia – Tuberous Sclerosis – Other Disorders of the Dermis – Albright Hereditary Osteodystrophy – Cutis Verticis Gyrata – Familial Dysautonomia – François Syndrome – Lipoid Proteinosis – Multiple Pterygia – Systemic Hyalinosis
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23

Smith, Claire. Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder. Redcliff-House Publications, 2017.

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24

Sybert, Virginia P. Disorders of the Dermis. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780190276478.003.0005.

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Chapter 5 covers Collagen disorders (Ainhum, Amniotic Bands, Buschke-Ollendorff Syndrome, Dermatosparaxis), Ehlers-Danlos Syndromes (Ehlers-Danlos Types I, II, and III, Ehlers-Danlos Type IV, Ehlers-Danlos Type VI, Ehlers-Danlos Type VIII, and Reactive Perforating Collagenosis), Elastin (Costello Syndrome, Cutis Laxa, and Pseudoxanthoma Elasticum), Vascular disorders (Ataxia Telangiectasia, Cutis Marmorata Telangiectatica Congenita, Fabry Syndrome, Familial Flame Nevi, Hereditary Glomus Tumors, Hereditary Hemorrhagic Telangiectasia, Klippel-Trenaunay-Weber Syndrome, Maffucci Syndrome, and Sturge-Weber Syndrome, and Multiple Cutaneous and Mucosal Venous Malformations), Mixed disorders (Aplasia Cutis Congenita, Focal Dermal Hypoplasia, Tuberous Sclerosis Complex), and other Disorders of the Dermis (Albright Hereditary Osteodystrophy, Cutis Verticis Gyrata, Familial Dysautonomia, François Syndrome, Hyaline Fibromatosis Syndrome, Lipoid Proteinosis, and Multiple Pterygia). Each condition is discussed in detail, including dermatologic features, associated anomalies, histopathology, basic defect, treatment, mode of inheritance, prenatal diagnosis, and differential diagnosis.
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25

Guide to Living with Ehlers-Danlos Syndrome: Bending Without Breaking. Kingsley Publishers, Jessica, 2014.

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26

Hakim, Alan, and Isobel Knight. Guide to Living with Ehlers-Danlos Syndrome: Bending Without Breaking. Kingsley Publishers, Jessica, 2014.

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27

Trustful, B. Clint. Ehlers-Danlos Diet Cookbook: The Ultimate Guide to Treatment, Management, Prevention, Diet and Exercises for Quick Relief of Ehlers-Danlos Syndrome and Hypermobility Syndrome. Independently Published, 2021.

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28

EDS Survival Guide: 5 Keys to Thriving with Ehlers-Danlos Syndrome. Independently Published, 2021.

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29

E. D. S. Zebra EDS Zebra Books. Writing about My Health Journey with Ehlers-Danlos Syndrome: College Ruled Notebook. Independently Published, 2020.

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30

Molecular Genetics and Pathogenesis of Ehlers–Danlos Syndrome and Related Connective Tissue Disorders. MDPI, 2020. http://dx.doi.org/10.3390/books978-3-03936-323-0.

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31

Grahame, Rodney, and Isobel Knight. Multidisciplinary Approach to Managing Ehlers-Danlos - Hypermobility Syndrome: Working with the Chronic Complex Patient. Kingsley Publishers, Jessica, 2013.

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32

Grahame, Rodney, and Isobel Knight. Multidisciplinary Approach to Managing Ehlers-Danlos - Hypermobility Syndrome: Working with the Chronic Complex Patient. Kingsley Publishers, Jessica, 2013.

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33

BROCK, Isabelle DUBOIS, RAAL, Yannick ATAMBONA, Claude HAMONET, and Stephen PORGES. Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease - the Epigenetic Revolution - Emergencies. Independently Published, 2022.

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34

Ehlers-Danlos Syndrome - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References. ICON Health Publications, 2004.

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35

Tregaskes, Joseph N. Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder: Dental Assessment Guidance - HEDS and HSD. Redcliff-House Publications, 2019.

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36

with:, Diana Jovin (Editor), Richard Barnum M.D. Paldeep Atwal M.D., Linda Bluestein M.D. Pradeep Chopra M.D., Tania Dempsey M.D. Shanda Dorff M.D., Kristin Herman M.D. Matthew Hamilton M.D., Myles Koby M.D. Petra Klinge M.D., Anne Maitland M.D. Andrew J. Maxwell M.D., et al. Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Hidden Stripes Publications, Inc., 2020.

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37

Hakim, Alan. Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder: Preoperative Assessment Guidance - HEDS and HSD. Redcliff-House Publications, 2019.

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38

Freeman, Lynetta Jean. Skin wound healing in Ehlers-Danlos syndrome: Clinical, histopathological and biomechanical comparisons in affected and nonaffected dogs and cats. 1986.

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39

The Official Patient's Sourcebook on Ehlers-Danlos Syndrome: A Revised and Updated Directory for the Internet Age. Icon Health Publications, 2002.

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40

Wordsworth, Paul. Metabolic disease of skeleton and inherited disorders. Oxford University Press, 2011. http://dx.doi.org/10.1093/med/9780199550647.003.010001.

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♦ Classic metabolic bone diseases include osteoporosis, osteomalacia, Paget’s disease, and parathyroid bone disease♦ Heritable disorders of the skeleton include numerous osteochrondrodysplasias, Marfan syndrome, and Ehlers-Danlos syndrome♦ Investigation of short stature is indicated for those below 0.4 percentile, with skeletal disproportion and/or progressive shortness♦ Genetic mutations for most of these conditions have been identified but clinical/radiographic features are usually diagnostic.
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41

Michels, Virginia V. Genetics. Oxford University Press, 2012. http://dx.doi.org/10.1093/med/9780199755691.003.0276.

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Genetic factors play a role in the development of many types of human disease. Genetic determinants may be chromosome abnormalities (Down syndrome, Kleinfelter syndrome, Turner syndrome), single gene defects (dilated and hypertrophic cardiomyopathies, Ehlers-Danlos syndrome, Marfan syndrome, neurofibromatosis, tuberous sclerosis, Gaucher disease, cystic fibrosis, sickle cell disease), mitochondrial mutations (MELAS, MERRF, Kearns-Sayre syndrome), or epigenetic or multifactorial factors. Genetics testing methods are also reviewed.
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42

Price, Susan. Genetic bone and joint disease. Edited by Patrick Davey and David Sprigings. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199568741.003.0276.

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Genetic conditions affecting the skeleton and supporting structures are individually rare and heterogeneous. This chapter presents an approach to assessing patients with suspected skeletal dysplasia, osteogenesis imperfecta, Marfan syndrome, and Ehlers–Danlos syndrome. Skeletal dysplasias are caused by abnormalities of bone growth and modelling; the commonest non-lethal type is achondroplasia, with an incidence of 1/10 000 to 1/30 000. The typical presentation of osteogenesis imperfecta is with multiple fractures, sometimes prenatally. There may be associated short stature, bone deformity, dentogenesis imperfecta, blue sclera, and hearing loss. Most patients with osteogenesis imperfecta have mutations in COL1A1 or COL1A2. Marfan syndrome is a connective tissue disease with a pattern of symptoms related to the presence of fibrillin in tissues. Typically, affected individuals are of tall, thin stature, with long fingers and toes (arachnodactyly), a pectus deformity, and scoliosis. Between 66% and 91% of individuals with Marfan syndrome have a mutation in fibrillin-1 (FBN1; locus: 15q21). All forms of Ehlers–Danlos syndrome present with variable thinning and fragility of skin, leading to easy bruising and poor scar formation. There is skin and joint laxity. In severe forms, blood vessels and internal organs are affected.
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43

Tinkle, Brad T. Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome. Left Paw Press, LLC, 2010.

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44

Begum, Shefaly, and Saarah Ahmed. Saarah Felt Like a Princess When She Sat on Her Throne: Living with a Rare Disease Ehlers Danlos Syndrome. AuthorHouse, 2022.

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45

Begum, Shefaly, and Saarah Ahmed. Saarah Felt Like a Princess When She Sat on Her Throne: Living with a Rare Disease Ehlers Danlos Syndrome. AuthorHouse, 2022.

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46

Jolly, Elaine, Andrew Fry, and Afzal Chaudhry, eds. Genetics. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199230457.003.0010.

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Chapter 10 covers the basic science and clinical topics relating to genetics which trainees are required to learn as part of their basic training and demonstrate in the MRCP. It covers karyotype, mitosis, and meiosis, mechanisms of inheritance/disease transmission, mitochondrial disease, trinucleotide repeats and imprinting, investigative techniques in genetic medicine, Down syndrome, Klinefelter syndrome, Turner syndrome, neurofibromatosis, tuberous sclerosis, myotonic dystrophy, Friedreich ataxia, fragile X syndrome, Prader-Willi syndrome, Angelman syndrome, and Ehlers-Danlos syndrome.
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47

SHORE, Geraldine. Your Body with Ehlers Danlos Syndrome Eds Support Awareness: Lined Journal and Diary for Writing and Notes for Girls and Women. Independently Published, 2022.

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48

Awareness, A. D. EDS Chronic Pain Journal: Ehlers Danlos Syndrome Journal with Assessment Pages, Symptom Tracker, Doctors Appointments, Relief Treatment and More for Zebra Warriors. Independently Published, 2020.

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49

Awareness, A. D. EDS Chronic Pain Journal: Ehlers Danlos Syndrome Journal with Assessment Pages, Symptom Tracker, Doctors Appointments, Relief Treatment and More for Zebra Warriors. Independently Published, 2020.

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50

News, PM Medical Health. 21st Century Complete Medical Guide to Ehlers-Danlos Syndrome (EDS), Hypermobility, Authoritative Federal Government Clinical Data and Practical Information for Patients and Physicians. Progressive Management, 2004.

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