Better Mobility Lab
**Updated Referral Information**
Unfortunately due to wait times exceeding 3 years and lack of physician and allied health personnel support, 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, but more support in the clinic is necessary at this time. This will hopefully be temporary, until we are able to establish a multidisciplinary care team in this clinic. This decision was not made lightly. Thank you for your understanding and patience.
What is the Connective Tissue Disorders Rehabilitation Clinic?
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 the Hypermobility Spectrum Disorders, the Ehlers-Danlos Syndromes, Marfan Syndrome, Loewy-Dietz Syndrome, Down Syndrome, Stickler Syndrome, and Familial Thoracic Aneurysm and Dissection syndromes, amongst others. Clinical trainees and researchers are active parts of this clinic to advance clinical awareness and the care of our patients.
The Grand Visions are:
- to develop a multidisciplinary patient-engaged centre for the assessment and management of Connective Tissue Disorders in Southern Alberta,
- to build the research evidence for rehabilitating conditions that cause loose large and small joints, and
- to educate clinicians from a variety of disciplines about the nuances of caring for patients with a variety of Connective Tissue Disorders
In order to do this, we need your support. We are looking for donors to build a sustainable clinic. Please contact us if you are able to help, or check out our funding page for information on how to make a donation.
Resources on Inherited Connective Tissue Disorders
Dr. Manocha is a physiatrist (specialist doctor in Physical Medicine & Rehabilitation). Dr. Manocha’s role is to assist in the physical rehabilitation of the musculoskeletal (bone and joint) consequences of connective tissue disorders, particularly with regards to exercises, bracing, adaptive equipment, preparing for and recovering from surgery, preparing for pregnancy and the postpartum period, adapting hobbies/work/family life, and educating your other healthcare providers.
For more information on what a physiatrist is, please click here.
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.
- Hypermobility Spectrum Disorders & the Ehlers-Danlos Syndromes
- Foundations & Societies:
- EDS Society
- Hypermobility Syndromes Association
- The ILC Foundation
- Ehlers Danlos Society UK
- Peer Support:
- Ehlers Danlos Syndrome Canada
- EDS & Patient Engagement in Canadian Research (EDS Canada)
- The Ehlers-Danlos Syndrome Society
- Loose Connections Magazine
- Books
- 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
- Diet & EDS/HSD
- Dysautonomia Support Network
- Mast Cell Dysfunction
- The Mastocytosis Society of Canada
- For Healthcare Providers/Researchers:
- For Healthcare Providers/Researchers:
- Overviews of Classifications and Presentations (For Healthcare Providers & Researchers):
- 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.
- 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:https://pubmed.ncbi.nlm.nih.gov/28145606/
- Respiratory Complications
- Classical EDS (cEDS)
- Hypermobile EDS (hEDS)
- Vascular EDS (vEDS)
- Overviews of Classifications and Presentations (For Healthcare Providers & Researchers):
- Foundations & Societies:
- Marfan, Loeys-Dietz, Familial Aortic Aneurysm, and Stickler Syndromes
- Loeys-Dietz Syndromes
- Loeys-Dietz Syndrome Foundation Canada
- 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: https://pubmed.ncbi.nlm.nih.gov/24577266/
- 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: Early surgical experience with Loeys-Dietz: a new syndrome of aggressive thoracic aortic aneurysm disease - PubMed (nih.gov)
- Bone Health:
- General:
- Marfan Syndrome
- The Marfan Foundation
- For Healthcare Providers:
- 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: https://pubmed.ncbi.nlm.nih.gov/28837453/
- Dean JC. Marfan syndrome: clinical diagnosis and management. Eur J Hum Genet. 2007 Jul;15(7):724-33: https://pubmed.ncbi.nlm.nih.gov/17487218/
- 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: https://pubmed.ncbi.nlm.nih.gov/8227807/
- For Healthcare Providers & Researchers:
- General Genetics & Presentation:
- Verstraeten A et al. Marfan Syndrome and Related Disorders: 25 Years of Gene Discovery. Hum Mutat. 2016 Jun;37(6):524-31: https://pubmed.ncbi.nlm.nih.gov/26919284/
- General Genetics & Presentation:
- Loeys-Dietz Syndromes
- General
- Videos
- Getting stuck in the negatives (and how to get unstuck) - Alison Ledgerwood
- How to have effective doctor appointments - Shani Weber
- For Healthcare Providers & Researchers:
- Clinical manifestations:
- Bone health:
- Videos