

Require more medical training and insurance coverage for hEDS and related disorders
Recent signers:
Lori and 19 others have signed recently.
The Issue
I have personally experienced the challenges that come with being diagnosed with Ehlers-Danlos Syndrome (EDS), a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Unfortunately, my journey to a proper diagnosis and effective treatment was not an easy one. I spent over 20 years with chronic pain, only to be told by a multitude of doctors that there was nothing wrong with me, or that I was a mystery. I finally have the diagnosis, however the care plan is expensive and not covered by insurance, which is why I am here - to hopefully bring about changes for all the other individuals out there facing the same issue. My family member also struggles with this condition, and it has become painfully clear that there is a significant lack of awareness and expertise among medical professionals when it comes to EDS, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) and Fibromyalgia. EDS, MCAS, and POTS are often interconnected, and yet, there is inadequate education and training for the medical community to properly recognize and treat these conditions. According to recent data from the Ehlers-Danlos Society, it takes an average of 10-12 years for a patient to receive an accurate diagnosis of EDS, often enduring unnecessary treatments and misdiagnoses along the way. This is not only frustrating but can lead to further health complications. Furthermore, innovative treatment options such as functional medicine and prolotherapy offer promising results for individuals with these conditions. However, many are left to endure pain and a reduced quality of life because insurance companies do not cover these essential treatments. It is disheartening to see patients unable to access care that could substantially improve their lives simply due to financial barriers. This petition calls for mandatory training programs for healthcare professionals focusing on EDS, MCAS, and POTS, ensuring that medical students and practitioners can better identify, understand, and treat these complex conditions. Additionally, insurance providers must recognize the value and necessity of covering functional medicine and prolotherapy. By doing so, we can offer better healthcare outcomes for those affected by these chronic illnesses. Join me in demanding that our healthcare system acknowledges and addresses these gaps. We need real change that provides timely and effective diagnoses and treatments, preventing future suffering and enhancing the lives of those living with these conditions. Sign this petition to bring about the necessary changes in medical education and insurance policies.

Dawn Van FossenPetition Starter
43
Let’s get to 50 signatures!
Recent signers:
Lori and 19 others have signed recently.
The Issue
I have personally experienced the challenges that come with being diagnosed with Ehlers-Danlos Syndrome (EDS), a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Unfortunately, my journey to a proper diagnosis and effective treatment was not an easy one. I spent over 20 years with chronic pain, only to be told by a multitude of doctors that there was nothing wrong with me, or that I was a mystery. I finally have the diagnosis, however the care plan is expensive and not covered by insurance, which is why I am here - to hopefully bring about changes for all the other individuals out there facing the same issue. My family member also struggles with this condition, and it has become painfully clear that there is a significant lack of awareness and expertise among medical professionals when it comes to EDS, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) and Fibromyalgia. EDS, MCAS, and POTS are often interconnected, and yet, there is inadequate education and training for the medical community to properly recognize and treat these conditions. According to recent data from the Ehlers-Danlos Society, it takes an average of 10-12 years for a patient to receive an accurate diagnosis of EDS, often enduring unnecessary treatments and misdiagnoses along the way. This is not only frustrating but can lead to further health complications. Furthermore, innovative treatment options such as functional medicine and prolotherapy offer promising results for individuals with these conditions. However, many are left to endure pain and a reduced quality of life because insurance companies do not cover these essential treatments. It is disheartening to see patients unable to access care that could substantially improve their lives simply due to financial barriers. This petition calls for mandatory training programs for healthcare professionals focusing on EDS, MCAS, and POTS, ensuring that medical students and practitioners can better identify, understand, and treat these complex conditions. Additionally, insurance providers must recognize the value and necessity of covering functional medicine and prolotherapy. By doing so, we can offer better healthcare outcomes for those affected by these chronic illnesses. Join me in demanding that our healthcare system acknowledges and addresses these gaps. We need real change that provides timely and effective diagnoses and treatments, preventing future suffering and enhancing the lives of those living with these conditions. Sign this petition to bring about the necessary changes in medical education and insurance policies.

Dawn Van FossenPetition Starter
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AmericanMedicalAssociation
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Petition created on April 26, 2026