Better Mobility Lab

Unfortunately we are no longer accepting referrals for Hypermobility Spectrum Disorders or hypermobile subtype Ehlers-Danlos Syndrome. We know this is very disappointing for patients and physicians. This decision was not made lightly. Thank you for your understanding.

The Connective Tissue Disorders Rehabilitation Clinic at Foothills Medical Centre was developed to focus on assessment and management of the musculoskeletal consequences of conditions such as monogenic forms of the Ehlers-Danlos Syndromes, Marfan Syndrome, the Loeys-Dietz Syndromes, Down Syndrome, Stickler Syndrome, and Familial Thoracic Aneurysm and Dissection syndromes, amongst others. Clinical and research trainees are active parts of this clinic to advance patient care and awareness of these conditions and their impacts.

The Grand Visions are:

• to develop a multidisciplinary patient-informed centre for the assessment and management of inherited connective tissue disorders in Southern Alberta,
• to build the research evidence for rehabilitating these conditions, and
• to educate clinicians from a variety of disciplines about maintaining quality of life with patients with a variety of inherited connective tissue disorders

In order to do this, we need your support:

• Please click here or contact us if you are able to help with volunteer or financial support.
• Patient and Family Centred Care Week is typically in November. Advocate at your local hospital for more resources to care for people with these conditions.
• Write your local MLA and copy our clinic to advocate for more resources to care for people with these conditions. Our address is: AC144, Special Services Building, Foothills Medical Centre, 1403-29 Street NW, Calgary, AB, T2N 2T9.
• If you would like to participate in any local research studies, please click here.
• If you would like to be added to our list of people to contact to participate in future research studies, please click here.
• If you would like to be added to our quarterly newsletter discussing our local research, please click here.

This clinic is located at Foothils Medical Centre in the Special Services Building.

If you are driving, we suggest parking your vehicle at Central Parking (Lot 1). You will then cross the street towards the Special Services Building. After entering the building continue walking and you will see the Information Desk on your left and the Garden Deli Cafeteria on your right. Once you have passed the corridors with the elevators and bathrooms, take an immediate right into the first hallway and approach the reception desk.

Upon entering the Foothills Medical Centre, you can also consult the Information Desk or the hospital volunteers in red vests to help you find your way to our clinic.

The following educational websites are provided for general guidance. We do not take responsible for site content. Site content does not constitute medical advice. Please speak to your own healthcare providers for further guidance. To suggest a resource, please email bettermobilitylab@ucalgary.ca.

• Our Hope for Hypermobility Conferences
  • These are hybrid (in-person in Calgary and available virtually) conferences run every year to help patients and local clinicians learn more about research and care for people with Hypermobility Spectrum Disorders and hypermobile Ehlers-Danlos Syndrome
    • Hope for Hypermobility 2023
    • Hope for Hypermobility 2024
      • You can watch the videos from the event here: http://www.youtube.com/@BetterMobilityLab
• Foundations & Societies:
  • EDS Society
    • https://www.ehlers-danlos.com/
    • Consider downloading this wallet card: Download Your Wallet Card - The Ehlers Danlos Society
  • Hypermobility Syndromes Association
    • https://www.hypermobility.org/
  • The ILC Foundation
    • https://www.theilcfoundation.org/
  • Ehlers Danlos Society UK
    • https://www.ehlers-danlos.org/
• Peer Support (for patients):
  • Ehlers Danlos Syndrome Canada
    • https://www.facebook.com/edscanada/
  • EDS & Patient Engagement in Canadian Research (EDS Canada)
    • https://www.facebook.com/groups/115737332411227/
  • The Ehlers-Danlos Syndrome Society
    • https://www.ehlers-danlos.com/community-resources/
  • Loose Connections Magazine
    • https://www.ehlers-danlos.com/loose-connections-emagazine/
  • Dysautonomia Support Network
    • https://www.dysautonomiasupport.org/
• Books (for patients):
  • Bending Without Breaking - Isobel Knight
  • Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders - Paldeep Atwal, Myles Koby, Jill Schofield
  • Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome - Brad T. Tinkle
• Life Hacks (For Patients):
  • Videos by Emily Rich (Arizona Occupational Therapist)

• For Healthcare Providers/Researchers
  • To learn more: EDS ECHO Healthcare Professionals - The Ehlers Danlos Society
  • Overviews of Classifications and Clinical Presentations:
    • Malfait F et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):8-26.
    • Brady AF et al. The Ehlers-Danlos syndromes, rare types. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):70-115.
  • Hypermobility Spectrum Disorders & Hypermobile Ehlers-Danlos Syndrome:
    • Castori M et al. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):148-157.
    • Castori M et al. Natural history and manifestations of the hypermobility type Ehlers-Danlos syndrome: a pilot study on 21 patients. Am J Med Genet A. 2010 Mar;152A(3):556-64.
    • How to diagnose hEDS
  • Classical EDS:
    • Bowen JM et al. Ehlers-Danlos syndrome, classical type. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):27-39.
  • Vascular EDS (vEDS)
    • Byers PH et al. Diagnosis, natural history, and management in vascular Ehlers-Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):40-47.
    • Wallet Card, Emergency Preparedness
• Diet, Nutrition, Gastrointestinal Disorders & Hypermobility Spectrum Disorders/all types of Ehlers-Danlos Syndrome
  • PowerPoint Talks on Management: https://tinyurl.com/hacmdeds
  • Castori M, Morlino S, Pascolini G, Blundo C, Grammatico P. Gastrointestinal and nutritional issues in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type. Am J Med Genet C Semin Med Genet. 2015 Mar;169C(1):54-75.
  • Thwaites PA, Gibson PR, Burgell RE. Hypermobile Ehlers-Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know. J Gastroenterol Hepatol. 2022 Sep;37(9):1693-1709. doi: 10.1111/jgh.15927. Epub 2022 Jul 20. PMID: 35750466; PMCID: PMC9544979.
• Mast Cell Dysfunction
  • For Patients:
    • The Mastocytosis Society of Canada
      • https://www.mastocytosis.ca/en/
  • For Healthcare Providers/Researchers:
    • Brock I et al. Mast cell activation disease and immunoglobulin deficiency in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):473-481.
• Pain Management
  • Schubart JR, Schaefer E, Janicki P, Adhikary SD, Schilling A, Hakim AJ, Bascom R, Francomano CA, Raj SR. Resistance to local anesthesia in people with the Ehlers-Danlos Syndromes presenting for dental surgery. J Dent Anesth Pain Med. 2019 Oct;19(5):261-270.
• Respiratory Complications
  • Bascom R et al. Respiratory manifestations in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):533-548.
  • Chohan K, Mittal N, McGillis L, et al. A review of respiratory manifestations and their management in Ehlers-Danlos syndromes and hypermobility spectrum disorders. Chronic Respiratory Disease. 2021;18.
• Speech, Ear, Nose, and Throat Issuess:
  • ENT Symptoms & Treatment for EDS & Hypermobility Disorders: A Speech & Language Therapist Perspective by Gary Wood

• Hypermobility Spectrum Disorders/Hypermobile EDS:

  • Physical Activity, Exercise, Physical Therapy:
    • For Patients:
      • Jeannie di Bon (United Kingdom Physiotherapist - Pilates Videos)
      • Libby Hensley (North Carolina Physiotherapist - Yoga Videos)
      • Intelligent Exercise - How you can take control with EDS - The Ehlers Danlos Society
    • For Researchers/Clinicians:
      • Brittain et al. (2024) Physical therapy interventions in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: a scoping review. Disability and Rehabilitation, 46:10, 1936-1953.
      • Buryk-Iggers S et al. Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review. Arch Rehabil Res Clin Transl. 2022 Mar 4;4(2):100189. doi: 10.1016/j.arrct.2022.100189.
      • Smith TO et al. (2013). Physiotherapy and occupational therapy interventions for people with benign joint hypermobility syndrome: a systematic review of clinical trials. Disability and Rehabilitation, 36(10), 797–803.
      • Zabriskie HA. Rationale and Feasibility of Resistance Training in hEDS/HSD: A Narrative Review. J Funct Morphol Kinesiol. 2022 Aug 20;7(3):61. doi: 10.3390/jfmk7030061.
  • Urogynocological
    • Arunkalaivanan AS, Morrison A, Jha S, Blann A. Prevalence of urinary and faecal incontinence among female members of the Hypermobility Syndrome Association (HMSA). J Obstet Gynaecol. 2009 Feb;29(2):126-8.
    • Castori M, Morlino S, Dordoni C, Celletti C, Camerota F, Ritelli M, Morrone A, Venturini M, Grammatico P, Colombi M. Gynecologic and obstetric implications of the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome hypermobility type) in 82 Italian patients. Am J Med Genet A. 2012 Sep;158A(9):2176-82.
    • Hugon-Rodin J, Lebègue G, Becourt S, Hamonet C, Gompel A. Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphanet J Rare Dis. 2016 Sep 13;11(1):124.
    • Jha S, Arunkalaivanan AS, Situnayake RD. Prevalence of incontinence in women with benign joint hypermobility syndrome. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Jan;18(1):61-4.
    • Mastoroudes H, Giarenis I, Cardozo L, Srikrishna S, Vella M, Robinson D, Kazkaz H, Grahame R. Lower urinary tract symptoms in women with benign joint hypermobility syndrome: a case-control study. Int Urogynecol J. 2013 Sep;24(9):1553-8.
    • Mastoroudes H, Giarenis I, Cardozo L, Srikrishna S, Vella M, Robinson D, Kazkaz H, Grahame R. Prolapse and sexual function in women with benign joint hypermobility syndrome. BJOG. 2013 Jan;120(2):187-192.
  • Pain Management:
    • Castori et al. (2011) Management of pain and fatigue in the joint hypermobility syndrome (aka Ehlers-Danlos Syndrome, Hypermobility Type): Principles and proposal for a multidisciplinary approach. Am J Med Genet Part A 158A:2055-2070.
    • Jeong H-J et al. (2023) Pain Characteristics and Symptom Management in Children with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorder. Phys Occ Ther Ped 43(5):630-643.
  • Sleep
    • Gaisl T, Giunta C, Bratton DJ, et al. Obstructive sleep apnoea and quality of life in Ehlers-Danlos syndrome: a parallel cohort study. Thorax 2017;72:729-735.
    • Sedky K, Gaisl T, Bennett DS. Prevalence of obstructive sleep apnea in joint hypermobility syndrome: a systematic review and meta-analysis. J Clin Sleep Med. 2019;15(2):293–299.
  • Mind-Body
    • Sinibaldi L, Ursini G, Castori M. Psychopathological manifestations of joint hypermobility and joint hypermobility syndrome/ Ehlers-Danlos syndrome, hypermobility type: The link between connective tissue and psychological distress revised. Am J Med Genet C Semin Med Genet. 2015 Mar;169C(1):97-106.

   

These individuals have been recommended by other patients, but have not been personally vetted by Dr. Manocha.

• Kinesiologists:
  • Kalindra Walls
• Massage Therapists:
  • Christa Powers, Health Tree Wellness Centre
• Physical Therapists:
  • Mercedes Eustergerling, Vida Health and Wellness
  • Shilpa Kumar, Naturally Balanced
  • Christine MacSween, Vida Health and Wellness
  • Rebecca Margel, Fix Physio
• Prolotherapy:
  • Dr. Martin Breton, Infini Health
  • Eric Lavoie, Nurse Practitioner, Evidence Sport and Spinal Therapy
• You may wish to also look at this link, for healthcare providers who self-declare expertise in working with hypermobile individuals: Healthcare Professional Directory Archive - The Ehlers Danlos Society

Marfan, Loeys-Dietz, Familial Aortic Aneurysm, and Stickler Syndromes

The following educational websites are provided for general guidance. We do not take responsible for site content. Site content does not constitute medical advice. Please speak to your own healthcare providers for further guidance. To suggest a resource, please email bettermobilitylab@ucalgary.ca.

• General:
  • Clinical Management Videos & Tools - GenTAC Alliance
  • Meester JAN et al. Differences in manifestations of Marfan syndrome, Ehlers-Danlos syndrome, and Loeys-Dietz syndrome. Ann Cardiothorac Surg. 2017 Nov;6(6):582-594.
  • Bone health:
    • Charoenngam N et al. Bone Fragility in Hereditary Connective Tissue Disorders: A Systematic Review and Meta-Analysis. Endocr Pract. 2023 Jul;29(7):589-600.
• Marfan Syndrome
  • The Marfan Foundation
    • https://www.marfan.org/
  • For Healthcare Providers & Researchers:
    • Diagnosis, Presentation, Management:
      • How to diagnose Marfan Syndrome
      • Bitterman AD et al. Marfan Syndrome: A Clinical Update. J Am Acad Orthop Surg. 2017 Sep;25(9):603-609. 
      • Dean JC. Marfan syndrome: clinical diagnosis and management. Eur J Hum Genet. 2007 Jul;15(7):724-33.
      • Verstraeten A et al. Marfan Syndrome and Related Disorders: 25 Years of Gene Discovery. Hum Mutat. 2016 Jun;37(6):524-31.
    • Cardiovascular complications:
      • Roman MJ et al. Prognostic significance of the pattern of aortic root dilation in the Marfan syndrome. J Am Coll Cardiol. 1993 Nov 1;22(5):1470-6.
    • Bone Health:
      • Kohlmeier L, Gasner C, Marcus R. Bone mineral status of women with Marfan syndrome. Am J Med. 1993 Dec;95(6):568-72.
• Loeys-Dietz Syndromes
  • Loeys-Dietz Syndrome Foundation Canada
    • http://www.loeysdietzcanada.org/
  • For Healthcare Providers:
    • General:
      • MacCarrick G et al. Loeys-Dietz syndrome: a primer for diagnosis and management. Genet Med. 2014 Aug;16(8):576-87.
      • Williams JA et al. Early surgical experience with Loeys-Dietz: a new syndrome of aggressive thoracic aortic aneurysm disease. Ann Thorac Surg. 2007 Feb;83(2):S757-63; discussion S785-90.
    • Bone Health:
      • Guerrerio AL et al. Predictors of low bone density and fracture risk in Loeys-Dietz syndrome. Genet Med. 2022 Feb;24(2):419-429.

• Getting stuck in the negatives (and how to get unstuck) - Alison Ledgerwood
  • https://www.youtube.com/watch?v=7XFLTDQ4JMk
• How to have effective doctor appointments - Shani Weber
  • https://www.youtube.com/watch?v=iVZGy9Y3M2k&list=PLJ8LTDV_7QkvNCk1sYXY8IqzajPbtpPYr&index=40&t=27s
• Free Classes Through Alberta Healthy Living:
  • Better Choices, Better Health – Chronic Pain
  • Conserving your Energy
  • Eating Well and Managing Irritable Bowel Syndrome
  • Living Well with Stress
  • Moving Matters to Your Health
  • Pacing for people with chronic pain
  • Try a little self-kindness – motivating with self-compassion
  • Waking up to healthy sleep
  • Supervised Exercise Program (requires referral from MD)
  • Nutrition Program (requires referral from MD)
• Make sure your walking aids are fit properly and that you are using them correctly
  • Try our free interactive video feedback-based app for patients
  • Watch our free educational online videos
  • Check out our free walking aid fitting brochures
• Adaptive devices
  • Arthritis Society Catalogue
• Proprioceptive devices
  • BodyBraid for body proprioception
  • GiveMohr sling for shoulder stability
  • Solidea are compression garments recommended by many patients. They are available at KenronPharmacy or through Canadian Orthopedic Supply.