Connective Tissue Disorder Resources
Books and Articles
The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Kelly Freeman, MSM, David Goldstein, MD, PhD, Charles R. Thompson, MD
Disjointed - Navigating the Diagnosis and Management of hypermobility Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders by Diana Jovin (Editor) with 21 featured specialists.
Joint Hypermobility and Joint Hypermobility Syndrome by Alan G. Pocinki, MD, PLLC. 2010.
Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder by Claire Smith
Instagram Pages
Organization Pages
@ehlersdanlosresearch - Ehlers-Danlos Research Foundation
@nord_rare - National Organization for Rare Disorders
@ehlers.danlos - The Ehlers-Danlos Society
@thedysautonomiaproject - Dysautonomia education from the organization that created the book
Educators and Scientists
@Izzy.Kornblau - Genetic Counseling Student, EDS/POTS Patient Educator
@unbiasedscipod - Unbiased Science Education from two PhDs
@hypermobilitymd - Linda Bluestein, MD (EDS specialist) www.hypermobilitymd.com/educoaching
@Corddoesscience - Cortney Gensemer, PhD - EDS Patient and Published EDS Researcher
@the.dysautonomia.mommia - Amanda, RN-BSN, FDN-P in training; POTS Patient and Educator
@centerforcomplexneurology - Dysautonomia and EDS Specialists (Complexneurology.com)
@migraineworldsummit - Migraine awareness and leading research updates
@cirque_physio - Doctor of physical therapist that focuses on hypermobility disorder education
Mental Health and Disability Advocates
@chronicloveclub - A community for those with Chronic Illness
@tummyandgummy - Cats with EDS!
@anna_holtzman - Therapist and Chronic Pain Recovery
@delicatelittlepetal - EDS Writer and Disability Advocate
@thehealingtherapist - Mental Health Support and Services
Celebrities and Activists
@iamhalsey - Musician/Celebrity and EDS/POTS patient
@jameelajamil - Feminist/Actress/Celebrity with EDS
Research and Scientific Resources:
“Joint Hypermobility and Joint Hypermobility Syndrome” by Alan G. Pocinki, MD, PLLC. Copyright 2010. Retrieved December 2021 from:
“Ehlers Danlos Syndrome” Mayo Clinic. Retrieved June 2022.
Forghani I. (2019). Updates in Clinical and Genetics Aspects of Hypermobile Ehlers Danlos Syndrome. Balkan medical journal, 36(1), 12–16.
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: an official publication of the American Association of Anatomists, 250(3), 318–344.
Inayet, N., Hayat, J. O., Kaul, A., Tome, M., Child, A., & Poullis, A. (2018). Gastrointestinal Symptoms in Marfan Syndrome and Hypermobile Ehlers-Danlos Syndrome. Gastroenterology research and practice, 2018, 4854701.
Lam CY, Palsson OS, Whitehead WE, Sperber AD, Tornblom H, Simren M, Aziz I. Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome. Clin Gastroenterol Hepatol. 2021 Feb;19(2):277-287.e3. Epub 2020 Feb 25. PMID: 32109633.
Riley B. The Many Facets of Hypermobile Ehlers-Danlos Syndrome. J Am Osteopath Assoc. 2020 Jan 1;120(1):30-32. PMID: 31904772.
Syx D., De Wandele I., Rombaut L., Malfait F. Hypermobility, the Ehlers-Danlos syndromes and chronic pain. Clin Exp Rheumatol. 2017 Sep-Oct;35 Suppl 107(5):116-122. Epub 2017 Sep 28. PMID: 28967365.
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.
More articles available sourced at the bottom of our EDS Page
Twitter Accounts
@ehlersresearch
@RareDiseases
@TheEDSociety