People with Ehlers-Danlos Syndrome struggle to find doctors who understand EDS while managing joint dislocations, chronic pain, and multi-system problems that affect their entire body. When many providers don't recognize EDS or dismiss your symptoms, getting proper care feels impossible.
Solace EDS advocates are experienced medical professionals who:
Your advocate ensures you get care from providers who understand your condition.
Best of all, most Medicare patients pay nothing out of pocket.
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Most doctors have limited EDS knowledge. Your advocate identifies providers experienced with connective tissue disorders, verifies they understand hypermobility and related conditions, and helps educate providers about your specific needs. They ensure you're taken seriously, not dismissed.
EDS affects joints, heart, digestion, and more. Your advocate coordinates between rheumatologists, cardiologists, gastroenterologists, and other specialists, ensuring everyone understands how EDS connects your symptoms. They manage the complex web of providers needed for comprehensive EDS care.
Living with EDS requires accommodations at work, school, and home. Your advocate helps document your limitations, assists with disability paperwork, and connects you with occupational therapists. They ensure you get mobility aids, braces, and other supports covered by insurance.
With Solace, you get both a patient advocate and a supporting physician, which we refer to as your “care team”.
Your advocate will be there to manage the day to day aspects of your care: coordinating with doctors, researching potential solutions and communicating updates to you.
Your supporting physician can unlock resources for you and your advocate that might otherwise be out of reach.
Getting an EDS diagnosis often takes years of dismissal and misdiagnosis before finding knowledgeable providers. Solace advocates help you find geneticists familiar with EDS types, coordinate testing for vascular and other subtypes, and document hypermobility when genetic tests are negative. They help differentiate between EDS, HSD, and related conditions, ensure proper workup for dangerous vascular complications, and advocate when doctors dismiss symptoms. Your advocate shortens the diagnostic odyssey many EDS patients face.
EDS pain from subluxations, dislocations, and tissue damage requires specialized approaches beyond standard pain management. Solace advocates connect you with EDS-aware physical therapists who understand hypermobility, coordinate proper bracing and taping techniques, and find pain doctors who won't just dismiss you. They help document subluxations that don't show on X-rays, coordinate injection treatments for unstable joints, and ensure comprehensive pain management. Your advocate helps stabilize your body and manage pain effectively.
Many EDS patients deal with POTS, gastroparesis, and other dysautonomia symptoms requiring specialized management. Solace advocates coordinate between cardiology and neurology for POTS treatment, help access gastric emptying studies and motility testing, and find providers who understand the EDS-dysautonomia connection. They ensure proper hydration and electrolyte management, coordinate medications for orthostatic intolerance, and address GI complications. Your advocate manages the complex autonomic dysfunction that comes with EDS.
EDS requires a coordinated team including genetics, rheumatology, cardiology, and multiple therapists working together. Solace advocates build your care team with EDS-knowledgeable providers, ensure all specialists understand connective tissue implications, and coordinate communication between providers. They maintain comprehensive symptom documentation, track treatment responses across systems, and adjust your care team as needs evolve. Your advocate creates the coordinated care network essential for managing EDS complexity.