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Why Getting an Ehlers Danlos Diagnosis is So Important

Updated: Nov 10, 2023

Ehlers Danlos Syndrome (EDS) is a group of rare inherited disorders that affect the connective tissues in the body. This can impact various parts of the body, leading to a range of symptoms, and making diagnosis challenging. Often, people with EDS go undiagnosed for years, which can lead to increased symptoms and secondary conditions affecting other organ systems. In this blog post, we will discuss why getting an Ehlers Danlos diagnosis is so important, and why it is important to stay on top of your health.



Diagnosis of Other Associated Disease States


One of the benefits of getting an EDS diagnosis is the increased likelihood of being diagnosed with other associated disease states such as Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS is a condition that affects the autonomic nervous system, and can cause symptoms such as dizziness, fainting, and tachycardia. MCAS is a condition where mast cells release excessive amounts of chemicals, which can lead to a range of symptoms such as flushing, hives, and gastrointestinal issues. By getting an EDS diagnosis, you can be screened for these conditions and receive appropriate treatment.


Reason for Dental Issues


Many people with EDS experience dental issues such as crowding of teeth, gum recession, and joint hypermobility in the jaw. This can lead to discomfort, pain, and difficulty eating or speaking. By getting an EDS diagnosis, your dental provider can customize your care to meet your needs. They may recommend accommodations such as a bite guard to prevent damage to your teeth or orthodontic treatment to correct crowding.


Resistance/Ineffectiveness of Lidocaine for Procedures


One of the stranger symptoms associated with EDS is the resistance or ineffectiveness of lidocaine for procedures. Lidocaine is a local anesthetic used during dental and medical procedures to numb an area of the body. People with EDS may experience resistance, which can make procedures more painful or uncomfortable. By being aware of this symptom, your medical provider can work with you to ensure you receive appropriate pain management during procedures.


Management of Symptoms


Finally, getting an EDS diagnosis can help you better manage your symptoms. By having a diagnosis, you can work with your medical provider to develop a treatment plan that addresses your specific symptoms. This may include physical therapy to improve joint mobility, medications for pain management, and other accommodations to make your daily life more comfortable.



Getting an Ehlers Danlos diagnosis is essential for a range of reasons. Beyond just identifying the condition itself, it can help providers screen for associated diseases, manage dental issues, and provide pain management during procedures. Most importantly, an EDS diagnosis can help you better manage your symptoms and improve your quality of life along with getting disability approved if needed. If you suspect you may have EDS, talk to your medical provider about a referral to a specialist.

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