People often start here. Ehlers-Danlos syndrome or EDS, and I prefer it because that’s a mouthful, is a group of inherited disorders that are a result of your connective tissues. It can affect just about every tissue in the body. It’s defective collagen; think of all the places in your body that have collagen. It’s everywhere, from joints, ears, nose, gums, muscles, tendons, ligaments, and even your organs and nerves. There is really no place in our bodies that is unaffected. Our collagen, instead of being a strong, durable fabric like, say, canvas, is more like gauze or burlap. It Frays easily, is delicate and can rip or tear with little effort. 

Getting a diagnosis is not always easy; in fact, it took me about 20-25 years if I have my dates close. Most doctors don’t know about it or know very little. Diagnosis can consist of medical history(including family), physical exams, and sometimes genetic testing, which, let me tell you from personal experience, is expensive, and if you go with the wrong company, it can be low quality. A specialist like a geneticist or a rheumatologist will typically lead the process, some Orthopedic doctors will be able to as well. Any doctor can diagnose; they just need to do some research. I suggest directing them to The Ehlers-Danlos Society website. 

There are many types of EDS, currently around 13. The most common being hypermobile type or hEDS. This is the stereotypical presentation of hyperflexible joints, skin, etc. Then there is Classical EDS, which is highly elastic skin, think elastic man, and then Vascular, the most dangerous. Vascular is the scariest one of all. There are other subtypes, but they are so rare I won’t cover them. If you want to know more, please visit the Ehlers-Danlos Society page. 

There are many symptoms, and most can be dismissed and misdiagnosed as other things like Fibromyalgia and Anxiety. Symptoms can vary quite widely but most often include joint hypermobility (not everyone with EDS is hypermobile, especially as people age), stretchy skin, and tissue fragility. This can also lead to easy bruising, joint dislocations or subluxations(partial dislocations), and chronic pain. Each type of EDS has its own cluster of symptoms. 

Unfortunately, if you came here hoping for a cure, no such luck. This would require editing our genetics, which is not possible. Treatments focus on managing symptoms and comorbidity to prevent complications. This might involve physical therapy(make sure the physical therapist is EDS informed), pain management strategies, and often, as we get older, surgery, which is a whole ‘nother issue. 

Yes, as stated before, this is a genetic condition. Could it happen due to a random mutation? possibly but unlikely. Most types are passed down from parents to children. If you have EDS, or it runs in your family, genetic counseling can help you understand the risks and implications for future generations. It has been considered a rare disease for so many years and has resulted in many misdiagnoses, particularly for women, and speaking from personal experience, this can end in tragedy. 

Complications can vary widely based on the type of EDS and comorbidities. If you have the Vascular EDS, this is the scary one. Vascular type can result in ruptured organs and, most commonly, dissected aorta. All types of EDS can also include cardiovascular problems like valve and structural irregularities, early onset arthritis, and digestive issues. There are often comorbidities that are typically found with EDS, like the “Unholy Trifecta,” which is what I have: EDS, POTS(Postural Orthostatic Tachycardia Syndrome), and MCAS(Mast Cell Activation Syndrome)

Managing EDS involves regular checkups, a personalized exercise plan, and being cautious with activities that could and likely would result in injury. No contact sports. Eating a balanced diet can be difficult if you have comorbid like MCAS; I suggest getting to see a registered dietician (not a nutritionist, as they do not have the appropriate education.) This can also include medications such as pain medication, mast cell stabilizers, antihistamines, and more. Each person requires particular tailored care that will take time to trial and adjust. Be patient, I promise the right combo can be found if you are willing to put in the work. 

Absolutely! There are so many. Facebook, Reddit, TikTok, and more. Check out resources like The Ehlers-Danlos Society website they have online and in-person resources to check out. The UK version is good, too.

Currently, no, there is not a cure. Researchers are still trying to nail down which genes cause the condition. Advances in genetics and medicine happen every day and constantly offer new insights and therapies. We cant change our genes, but with the right treatments, we can work around and with them.