What is Ehlers-Danlos Syndrome or EDS?

According to the National Library of Medicine, EDS is a group of disorders that affect the connective tissues supporting the skin, bones, and blood vessels. “The most common thing that we tend to think about is joint dislocations or joint subluxations,” Dr. Alissa Zingman, a physician specializing in musculoskeletal preventive medicine and co-founder of the Ehlers-Danlos Syndrome Research Foundation, told E! News.

She added: “But it might not be that obvious, so it might look more like back pain at a young age, neck pain, headache. Plus it has a significant effect on the gastrointestinal tract in many people, so they may have a lot of cramping, abdominal pain.” Dr. Zingman herself suffers from the disorder, as well as POTS and MCAS.

How is EDS treated?

“A patient can go to the gastroenterologist for their gastrointestinal symptoms,” Zingman told E! News. “They can go to an orthopedic surgeon for their neck and shoulders, and a neurosurgeon for their lower back, like pain going down their leg. They can go to psychiatrists for attention difficulties. They can go see a neurologist for their headaches.”

dr. Alina Sharinn (formerly Rabinovich), a neurologist from New York, said, “Vascular issues are important to a neurologist like me, so [patients] may develop arterial aneurysms, which is an expulsion of the vessel that may rupture and bleed, or they may develop arterial dissection, which is a rupture inside the vessel wall which creates extra light and that light can cause a blockage of that particular vessel or it can cause plaque to build up which can go up and cause a stroke and have other risks.”

According to the National Cancer Institute, the lumen is the “cavity or channel within a tube or tubular organ such as a blood vessel or the intestine.”