Treating Joint Hypermobility / Ehlers-Danlos Syndrome

Diagnosis visits are 1 hour long and include evaluation for postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), cranial cervical instability (CCI), and fascia pathology. The evaluation for hypermobile EDS is based on the 2017 diagnostic criteria for hypermobile EDS revised by the International EDS Consortium in 2017.

Ehlers-Danlos Syndrome (EDS) is heterogeneous group of heritable connective tissue disorders. It is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. For most of these subtypes, mutations had been identified in collagen-encoding genes, or in genes encoding collagen-modifying enzymes. The International EDS Consortium revised the EDS classification to 13 subtypes - each with a set of clinical criteria. The diagnosis of the hypermobile subtype relies on the clinical criteria.

• Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, Fournel-Gigleux S, Frank M, Ghali N, Giunta C, Grahame R, Hakim A, Jeunemaitre X, Johnson D, Juul-Kristensen B, Kapferer-Seebacher I, Kazkaz H, Kosho T, Lavallee ME, Levy H, Mendoza-Londono R, Pepin M, Pope FM, Reinstein E, Robert L, Rohrbach M, Sanders L, Sobey GJ, Van Damme T, Vandersteen A, van Mourik C, Voermans N, Wheeldon N, Zschocke J, Tinkle B. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):8-26. doi: 10.1002/ajmg.c.31552. PMID: 28306229.

Comprehensive Visit

Virtual or in-person Visit

PRIOR TO VISIT This visit starts with a gathering of all records from all medical providers. Once the records are collated, they are reviewed in depth and summarized succinctly.

3 HOURS VISIT The in-person visit itself is approximately 3 hours. We will go over you goals and history in great depth. This will be followed by an in-depth examination that includes functional movement, ultrasound examination, and POTS diagnosis when appropriate. To aid in diagnosis and prognosticate response, treatment starts at this first visit and includes self-care recommendations. This will be followed by in-depth counseling and a comprehensive plan tailored to you that will help you achieve your goals.

REPORT Following your visit, you will receive 2 reports with evidence based references. 1. EDS report will include the Ehlers-Danlos Syndrome Systems Involvement Chart to aid in referral and establishing care with a multi-disciplinary team. The EDS report will also include the Spider Symptom Severe Scale as developed by Ninis N, De Wandelle I, Simmonds JV. Symptom Severity Scale: A descriptor for complex patients with hypermobility spectrum disorders and hypermobile EDS. 2015. 2. Integrative Medicine report with evidence based wellness interventions and includes the Dynamic Integrative Model for Fascia Chart. 

Dynamic Integrative Model for Fascia Visit

Virtual or in-person Visit​

PRIOR TO VISIT This visit starts with a gather the most labs and images. 

2 HOURS VISIT The visit itself is approximately 2 hours. We will go over you goals and history in-depth. This will be followed by an in-depth examination that includes functional movement, ultrasound examination, and POTS diagnosis when appropriate. To aid in diagnosis and prognosticate response, treatment starts at this first visit and includes self-care recommendations. This will be followed by in-depth counseling and an integrated plan per the Dynamic Integrative Model for Fascia tailored to you that will help you achieve your goals.

​REPORT Following your visit, you will receive 1 report with evidence based references and a descriptor of your treatment approach using the Dynamic Integrative Model for Fascia approach.

Ultrasound Elastography

Using ultrasound elastography, the deep fascia thickness and stiffness can be measured. The thickness is increased from excess extracellular matrix lay down. The stiffness as measure by elastography in hypermobile spectrum disorders is lower. 

SCM Fascia Thickness (normal < 1.5mm) SCM Strain index (normal SI approximately 2.1)

• Stecco A, Meneghini A, Stern R, Stecco C, Imamura M. Ultrasonography in myofascial neck pain: randomized clinical trial for diagnosis and follow-up. Surg Radiol Anat. 2014 Apr;36(3):243-53. doi: 10.1007/s00276-013-1185-2. Epub 2013 Aug 23. PMID: 23975091.

• Alsiri N, Al-Obaidi S, Asbeutah A, Almandeel M, Palmer S (2019) The impact of hypermobility spectrum disorders on musculoskeletal tissue stiffness: an exploration using strain elastography. Clin Rheumatol 38(1):85–95. https://doi.org/10.1007/s10067-018-4193-0

• Rombaut L, Malfait F, De Wandele I, Mahieu N, Thijs Y, Segers P, De Paepe A, Calders P (2012) Muscle-tendon tissue properties in the hypermobility type of Ehlers-Danlos syndrome. Arthritis Care Res 64(5):766–772. https://doi.org/10.1002/acr.21592

SCM Fascia Thickness (normal < 1.5mm) SCM Strain index (normal SI approximately 2.1)​