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References

About EDS

 

Malfait, F., Castori, M., Francomano, C. A., Giunta, C., Kosho, T., & Byers, P. H. (2020). The Ehlers–Danlos syndromes. Nature Reviews Disease Primers, 6(1), 64. https://doi.org/10.1038/s41572-020-0194-9

 

Mamdani, F., & Mankowitz, S. K. W. (2018). Ehler-Danlos. In Consults in Obstetric Anesthesiology (pp. 179–183). Springer International Publishing. https://doi.org/10.1007/978-3-319-59680-8_50

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Nelson, A. D., Mouchli, M. A., Valentin, N., Deyle, D., Pichurin, P., Acosta, A., & Camilleri, M. (2015). Ehlers Danlos syndrome and gastrointestinal manifestations: a 20-year experience at Mayo Clinic. Neurogastroenterology & Motility, 27(11), 1657–1666. https://doi.org/10.1111/nmo.12665

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Frequently Asked Questions 

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Byers, P. H., & Murray, M. L. (2012). Heritable collagen disorders: The paradigm of the Ehlers-Danlos syndrome. The Journal of Investigative Dermatology, 132(E1), E6-11. https://doi.org/10.1038/skinbio.2012.3 

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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), e031365. https://doi.org/10.1136/bmjopen-2019-031365 

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Di Giacomo, P., Celli, M., Ierardo, G., Polimeni, A., & Di Paolo, C. (2018). Evaluation of temporomandibular disorders and comorbidities in patients with ehler-–danlos: Clinical and digital findings. Journal of International Society of Preventive & Community Dentistry, 8(4), 333–338.  https://doi.org/10.4103/jispcd.JISPCD_103_18 

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Leganger, J., Fonnes, S., Kulas Søborg, M. L., Rosenberg, J., & Burcharth, J. (2022). The most common comorbidities in patients with Ehlers-Danlos  syndrome: A 15-year nationwide population-based cohort study. Disability and Rehabilitation, 44(2), 189–193. https://doi.org/10.1080/09638288.2020.1761890

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Malfait, F., & De Paepe, A. (2014). The Ehlers-Danlos Syndrome. In J. Halper (Ed.), Progress in heritable soft connective tissue diseases (pp. 129–143). Springer Netherlands. https://doi.org/10.1007/978-94-007-7893-1_9 

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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 

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Miklovic, T., & Sieg, V. C. (2021). Ehlers Danlos Syndrome. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK549814/ 

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Reychler, G., De Backer, M., Piraux, E., Poncin, W., & Caty, G. (2021). Physical therapy treatment of hypermobile Ehlers–Danlos syndrome: A systematic review. American Journal of Medical Genetics Part A, 185(10), 2986–2994. https://doi.org/10.1002/ajmg.a.62393 

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Ritelli, M., & Colombi, M. (2020). Molecular genetics and pathogenesis of ehlers-danlos syndrome and related connective tissue disorders. Genes, 11(5), E547. https://doi.org/10.3390/genes11050547 

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The Ehlers Danlos Society. (n.d.). Why the zebra? https://www.ehlers-danlos.com/why-the-zebra/ 

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Zhou, Z., Rewari, A., & Shanthanna, H. (2018). Management of chronic pain in Ehlers–Danlos syndrome. Medicine, 97(45), e13115. https://doi.org/10.1097/MD.0000000000013115

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EDS and Diet, Comorbidities and Symptoms, Diet Strategies 

 

Alomari, M., Hitawala, A., Chadalavada, P., Covut, F., al Momani, L., Khazaaleh, S., Gosai, F., al Ashi, S., Abushahin, A., & Schneider, A. (2020). Prevalence and Predictors of Gastrointestinal Dysmotility in Patients with Hypermobile Ehlers-Danlos Syndrome: A Tertiary Care Center Experience. Cureus. https://doi.org/10.7759/cureus.7881

 

Barrett, J. S. (2017). How to institute the low-FODMAP diet. Journal of Gastroenterology and Hepatology, 32, 8–10. https://doi.org/10.1111/jgh.13686

 

Beckers, A. B., Keszthelyi, D., Fikree, A., Vork, L., Masclee, A., Farmer, A. D., & Aziz, Q. (2017). Gastrointestinal disorders in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: A review for the gastroenterologist. Neurogastroenterology & Motility, 29(8), e13013. https://doi.org/10.1111/nmo.13013

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Cheshire, W. P. (2021). Salt: The paradoxical philosopher’s stone of autonomic medicine. Autonomic Neuroscience, 236, 102895. https://doi.org/10.1016/j.autneu.2021.102895 

 

Choudhary, A., Fikree, A., & Aziz, Q. (2021). Overlap between irritable bowel syndrome and hypermobile Ehlers–Danlos syndrome: An unexplored clinical phenotype? American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 561–569. https://doi.org/10.1002/ajmg.c.31938

 

Chumpitazi, B. P., Lim, J., McMeans, A. R., Shulman, R. J., & Hamaker, B. R. (2018). Evaluation of FODMAP Carbohydrates Content in Selected Foods in the United States. The Journal of Pediatrics, 199, 252–255. https://doi.org/10.1016/j.jpeds.2018.03.038

 

de Bortoli, N., Tolone, S., Frazzoni, M., Martinucci, I., Sgherri, G., Albano, E., Ceccarelli, L., Stasi, C., Bellini, M., Savarino, V., Savarino, E. v, & Marchi, S. (2018). Gastroesophageal reflux disease, functional dyspepsia and irritable bowel syndrome: common overlapping gastrointestinal disorders. Annals of Gastroenterology, 31(6), 639–648. https://doi.org/10.20524/aog.2018.0314

 

Do, T., Diamond, S., Green, C., & Warren, M. (2021). Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes. Current Nutrition Reports, 10(4), 324–333. https://doi.org/10.1007/s13668-021-00373-1

 

Du, L., Shen, J., Kim, J. J., He, H., Chen, B., & Dai, N. (2018). Impact of gluten consumption in patients with functional dyspepsia: A case-control study. Journal of Gastroenterology and Hepatology, 33(1), 128–133. https://doi.org/10.1111/jgh.13813

 

Duncanson, K. R., Talley, N. J., Walker, M. M., & Burrows, T. L. (2018). Food and functional dyspepsia: a systematic review. Journal of Human Nutrition and Dietetics, 31(3), 390–407. https://doi.org/10.1111/jhn.12506

 

Fedorowski, A. (2019). Postural orthostatic tachycardia syndrome: Clinical presentation, aetiology and management. Journal of Internal Medicine, 285(4), 352–366. https://doi.org/10.1111/joim.12852 

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Fragkos, K. C., Keetarut, K., Cox, A., Eady, J., Emmanuel, A. v., & Zarate-Lopez, N. (2019). Joint Hypermobility Syndrome Affects Response to a Low Fermentable Oligosaccharide, Disaccharide, Monosaccharide and Polyol Diet in Irritable Bowel Syndrome Patients: A Retrospective Study. Gastroenterology Research, 12(1), 27–36. https://doi.org/10.14740/gr1133

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Gensemer, C., Burks, R., Kautz, S., Judge, D. P., Lavallee, M., & Norris, R. A. (2021). Hypermobile Ehlers‐Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes. Developmental Dynamics, 250(3), 318–344. https://doi.org/10.1002/dvdy.220 

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Grigoriou, E., Boris, J. R., & Dormans, J. P. (2015). Postural orthostatic tachycardia syndrome (Pots): Association with ehlers-danlos syndrome and orthopaedic considerations. Clinical Orthopaedics and Related Research, 473(2), 722–728. https://doi.org/10.1007/s11999-014-3898-x 

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Halmos, E. P., Christophersen, C. T., Bird, A. R., Shepherd, S. J., Gibson, P. R., & Muir, J. G. (2015). Diets that differ in their FODMAP content alter the colonic luminal microenvironment. Gut, 64(1), 93–100. https://doi.org/10.1136/gutjnl-2014-307264

 

Lam, C. Y., Palsson, O. S., Whitehead, W. E., Sperber, A. D., Tornblom, H., Simren, M., & Aziz, I. (2021). Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects With Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome. Clinical Gastroenterology and Hepatology, 19(2), 277-287.e3. https://doi.org/10.1016/j.cgh.2020.02.034

 

Leganger, J., Fonnes, S., Kulas Søborg, M. L., Rosenberg, J., & Burcharth, J. (2022). The most common comorbidities in patients with Ehlers-Danlos syndrome: a 15-year nationwide population-based cohort study. Disability and Rehabilitation, 44(2), 189–193. https://doi.org/10.1080/09638288.2020.1761890

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Mantle, D., Wilkins, R. M., & Preedy, V. (2005). A novel therapeutic strategy for Ehlers–Danlos syndrome based on nutritional supplements. Medical Hypotheses, 64(2), 279–283. https://doi.org/10.1016/j.mehy.2004.07.023 ​

 

Nelson, A. D., Mouchli, M. A., Valentin, N., Deyle, D., Pichurin, P., Acosta, A., & Camilleri, M. (2015). Ehlers Danlos syndrome and gastrointestinal manifestations: a 20-year experience at Mayo Clinic. Neurogastroenterology & Motility, 27(11), 1657–1666. https://doi.org/10.1111/nmo.12665

 

Nordin, E., Brunius, C., Landberg, R., & Hellström, P. M. (2022). Fermentable oligo-, di-, monosaccharides, and polyols (FODMAPs), but not gluten, elicit modest symptoms of irritable bowel syndrome: a double-blind, placebo-controlled, randomized three-way crossover trial. The American Journal of Clinical Nutrition, 115(2), 344–352. https://doi.org/10.1093/ajcn/nqab337

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Panteliadis, C. P. (2022). Ehlers-Danlos Syndrome. In Neurocutaneous Disorders (pp. 393–399). Springer International Publishing. https://doi.org/10.1007/978-3-030-87893-1_36

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Pesce, M., Cargiolli, M., Cassarano, S., Polese, B., Conno, B. de, Aurino, L., Mancino, N., & Sarnelli, G. (2020). Diet and functional dyspepsia: Clinical correlates and therapeutic perspectives. World Journal of Gastroenterology, 26(5), 456–465. https://doi.org/10.3748/wjg.v26.i5.456

 

Potter, M. D. E., Duncaon, K., Jones, M. P., Walker, M. M., Keely, S., & Talley, N. J. (2020). Wheat Sensitivity and Functional Dyspepsia: A Pilot, Double-Blind, Randomized, Placebo-Controlled Dietary Crossover Trial with Novel Challenge Protocol. Nutrients, 12(7), 1947. https://doi.org/10.3390/nu12071947

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Riley, B. (2020). The many facets of hypermobile ehlers-danlos syndrome. Journal of Osteopathic Medicine, 120(1), 30–32. https://doi.org/10.7556/jaoa.2020.012 

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Sánchez-Manso, J. C., Gujarathi, R., & Varacallo, M. (2022). Autonomic dysfunction. In StatPearls. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK430888/ 

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Song, B., Yeh, P., & Harrell, J. (2021). Systemic manifestations of Ehlers-Danlos syndrome. Baylor University Medical Center Proceedings, 34(1), 49–53. https://doi.org/10.1080/08998280.2020.1805714 

 

Sperber, A. D., Bangdiwala, S. I., Drossman, D. A., Ghoshal, U. C., Simren, M., Tack, J., Whitehead, W. E., Dumitrascu, D. L., Fang, X., Fukudo, S., Kellow, J., Okeke, E., Quigley, E. M. M., Schmulson, M., Whorwell, P., Archampong, T., Adibi, P., Andresen, V., Benninga, M. A., … Palsson, O. S. (2021). Worldwide Prevalence and Burden of Functional Gastrointestinal Disorders, Results of Rome Foundation Global Study. Gastroenterology, 160(1), 99-114.e3. https://doi.org/10.1053/j.gastro.2020.04.014

 

Staudacher, H. M. (2017). Nutritional, microbiological and psychosocial implications of the low FODMAP diet. Journal of Gastroenterology and Hepatology, 32, 16–19. https://doi.org/10.1111/jgh.13688

 

Staudacher, H. M., Nevin, A. N., Duff, C., Kendall, B. J., & Holtmann, G. J. (2021). Epigastric symptom response to low FODMAP dietary advice compared with standard dietetic advice in individuals with functional dyspepsia. Neurogastroenterology & Motility, 33(11). https://doi.org/10.1111/nmo.14148

 

van Lanen, A.-S., de Bree, A., & Greyling, A. (2021). Efficacy of a low-FODMAP diet in adult irritable bowel syndrome: a systematic review and meta-analysis. European Journal of Nutrition, 60(6), 3505–3522. https://doi.org/10.1007/s00394-020-02473-0

 

Wang, C., & Fang, X. (2021). Inflammation and Overlap of Irritable Bowel Syndrome and Functional Dyspepsia. Journal of Neurogastroenterology and Motility, 27(2), 153–164. https://doi.org/10.5056/jnm20175

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Wang, H. (2021). A Review of the Effects of Collagen Treatment in Clinical Studies. Polymers, 13(22), 3868. https://doi.org/10.3390/polym13223868

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Images

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Billion Photos. (n.d.). DNA gene helix spiral molecule structure [Photograph]. Shutterstock. https://www.shutterstock.com/image-photo/dna-gene-helix-spiral-molecule-structure-1665847021 

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Bowen, J. M., Sobey, G. J., Burrows, N. P., Colombi, M., Lavallee, M. E., Malfait, F., & Francomano, C. A. (2017). Ehlers-Danlos syndrome, classical type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 27–39. https://doi.org/10.1002/ajmg.c.31548

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Designua. (n.d.). Collagen is the main structural protein in the: connective tissues, cartilages, bones, nails, derma and hair. Synthesis and types of collagen. illustration for medical, science, and educational use [Clip art]. Shutterstock. https://www.shutterstock.com/image-illustration/collagen-main-structural-protein-connective-tissues-1188596128 

 

Flaticon. (n.d.). Heredity free icon [Clip art]. https://www.flaticon.com/free-icon/heredity_4072396

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Getty Images. (n.d.). Brain aneurysm, computer artwork [Clip art]. 

https://www.gettyimages.ca/detail/illustration/brain-aneurysm-artwork-royalty-free-illustration/172591616

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Iconfinder. (n.d.). Constipation icon [Clip art]. 

https://www.iconfinder.com/icons/2202419/child_children_constipation_diarrhea_icon

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Iconscout. (n.d.). Abdominal pain icon [Clip art]. https://iconscout.com/icon/abdominal-pain-1609632

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Iconscout. (n.d.). Nausea icon [Clip art]. https://iconscout.com/icon/nausea-1609441

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Istock. (n.d.). Children scoliosis flat vector illustration [Clip art]. https://www.istockphoto.com/vector/scoliosis-flat-vector-illustration-gm1214149309-353132087

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Istock. (n.d.). Dna break icon [Clip art]. https://www.istockphoto.com/vector/dna-break-icon-on-black-and-white-vector-backgrounds-gm829683908-134902749

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Istock. (n.d.). Osteoporosis Vector illustration [Clip art]. https://www.istockphoto.com/vector/osteoporosis-icon-bone-structure-gm1177216184-328551095

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Istock. (n.d.). Salt stock photos [Photograph]. https://www.istockphoto.com/search/2/image?phrase=salt

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Myloview. (n.d.). Osteoporosis icon, bone structure [Clip art]. https://myloview.com/sticker-osteoporosis-icon-bone-structure-vector-illustration-no-B8FAEEB

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NounProject. (n.d.). Dizziness icon [Clip art]. https://thenounproject.com/icon/dizziness-2610736/

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NounProject. (n.d.). Heartburn icon [Clip art]. https://thenounproject.com/icon/heartburn-2745790/

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NounProject. (n.d.). Gastrointestinal perforation icon [Clip art]. https://thenounproject.com/icon/gastrointestinal-perforation-3454339/

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Onchira Wongsiri. (n.d.). Sick woman having a stomach ache, abdomen in black and white, Period cramps concept [Photograph]. Shutterstock. https://www.shutterstock.com/image-photo/sick-woman-having-stomach-ache-abdomen-696568864 

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OnlineWebFonts. (n.d.). Target svg [Clip art]. https://www.onlinewebfonts.com/icon/522858

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Pinclipart. (n.d.) Free png zebra download [Clip art]. https://www.pinclipart.com/pins/zebra/2/

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Pineapple Studio. (2018). Heap of bread stock photo [Photograph]. Shutterstock.

https://www.istockphoto.com/photo/heap-of-bread-gm995038782-269379619 

 

Rumruay. (n.d.). Postural Orthostatic Tachycardia Syndrome POTS intolerance tilt table test Dysautonomia low volume diagnosed measure pulse abnormal fast vessels fainting lightheadedness dizziness procedure breathing [Clip art]. Shutterstock. https://www.shutterstock.com/image-vector/postural-orthostatic-tachycardia-syndrome-pots-intolerance-1319209700 

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Vecteezy. (n.d.). Dislocated shoulder [Clip art]. https://www.vecteezy.com/vector-art/5849752-joint-dislocation-white-linear-icon-for-dark-theme-dislocated-shoulder-muscles-weakening-thin-line-customizable-illustration-isolated-vector-contour-symbol-for-night-mode-editable-stroke

 

VectorStock. (n.d.). Damaged lungs flat icon [Clip art].  https://www.vectorstock.com/royalty-free-vector/damaged-lungs-flat-icon-vector-30909975

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Zhang, W., Windsor, K., Jones, R., & Taunton, D. O. (2019). Hypermobile type Ehlers‐Danlos syndrome associated with hypogammaglobulinemia and fibromyalgia: A case‐based review on new classification, diagnosis, and multidisciplinary management. Clinical Case Reports, 7(4), 680–685. https://doi.org/10.1002/ccr3.2070

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