Building your care team

Patients with hypermobility, particularly those with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), often benefit from a comprehensive care team to manage their wide range of symptoms. Here’s how each healthcare professional can contribute to their care:

Core Care Team

• Primary Care Physician (PCP): Coordinates care, provides referrals, and manages general health needs.

• Physiotherapist (PT): Specializes in joint stability, movement patterns, and injury prevention through targeted exercises.

• Rheumatologist: Diagnoses and manages connective tissue disorders like EDS and HSD, as well as related joint and musculoskeletal pain.

• Pain Specialist: Develops comprehensive pain management plans using medications, injections, or other interventions.

• Geneticist: Confirms diagnoses of hereditary connective tissue disorders through genetic testing and counseling.

Musculoskeletal and Pain Management

• Physiotherapist (PT): Specializes in joint stability, movement patterns, and injury prevention through targeted exercises and manual therapy.

• Orthotist: Designs and fits custom orthotics, braces, or splints to provide joint stability and prevent injury.

• Pelvic Floor Physiotherapist: Assists with pelvic pain, incontinence, or pelvic floor dysfunction, which can be common in hypermobile individuals.

Neurological and Cardiovascular Support

• Neurologist: Assesses and manages neurological symptoms like migraines, nerve pain, and autonomic dysfunction.

• Cardiologist: Diagnoses and manages cardiovascular symptoms, particularly in patients with POTS, or valve issues.

ENT and Respiratory Care

• ENT (Ear, Nose, and Throat Specialist): Addresses issues like dizziness, tinnitus, or Eustachian tube dysfunction.

• Respirologist: Evaluates and treats breathing issues, particularly in cases of dysautonomia or chest wall instability.

Gastrointestinal and Nutritional Support

• Gastroenterologist: Manages digestive symptoms such as IBS, gastroparesis, or reflux.

• Dietitian: Provides nutritional support for energy management, gastrointestinal issues, or mast cell activation syndrome (MCAS).

Mental Health and Wellness Support

• Psychiatrist: Supports medication management for anxiety, depression, or other mental health challenges related to chronic illness.

• Psychotherapist or Psychologist: Offers support for managing anxiety, depression, or the emotional impact of chronic illness.

Specialists for Coexisting Conditions

• Immunologist or Allergist: Evaluates and manages Mast Cell Activation Syndrome (MCAS), allergies, and immune dysfunctions.

• Endocrinologist: Manages hormonal imbalances, including those affecting bone health, metabolism, and fatigue.

• Urologist: Treats bladder dysfunction or incontinence, which can occur in hypermobile individuals.

• Neuro-ophthalmologist: Assesses and treats visual disturbances, headaches, and neurological vision issues.

Collaborative Care Approach

Due to the multisystem nature of hypermobility, a coordinated team with open communication is essential. A primary care physician, physiotherapist, or rheumatologist often acts as the central care coordinator. Regular assessments and shared care plans ensure all aspects of the condition are managed effectively.