ehlers danlos FAQ

Before your appointment, it can help to write down: What symptoms you've been having and when they started. Whether any blood relatives, such as parents, grandparents or siblings, have had similar symptoms. If any blood relatives have died from a blood vessel or organ rupture. All medicines and supplements you take regularly.

If you or your child has very flexible joints along with skin or healing issues, frequent joint dislocations, unexplained bruising or unusual scars, or a family history of Ehlers-Danlos syndrome, talk with your healthcare professional about your concerns. Also talk with your healthcare professional if you're planning a pregnancy and have a family history of vascular EDS or other connective tissue disease. People with EDS should get medical help right away if they experience: Sudden pain or bleeding that they can't explain. Chest pain. Trouble breathing. Sudden dizziness or fainting when standing. Sudden changes in vision, such as flashes of light or dark spots.

Your healthcare professional may ask questions such as: Are any of your joints very flexible? Is your skin extra stretchy? Do you heal slowly or have wide scars after injuries? Ehlers-Danlos syndrome. Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes. Accessed May 5, 2025. Elsevier Point of Care. Clinical Overview: Ehlers-Danlos syndromes. https://www.clinicalkey.com. Accessed May 5, 2025. Stoler JM, et al. Ehlers-Danlos syndromes: Clinical manifestations and diagnosis. https://www.uptodate.com/contents/search. Accessed May 5, 2025. Hakim AJ, et al. Clinical manifestations and diagnosis of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder. https://www.uptodate.com/contents/search. Accessed May 5, 2025. Hakim AJ, et al. Treatment and prognosis of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder. https://www.uptodate.com/contents/search. Accessed May 5, 2025. Stoler JM, et al. Ehlers-Danlos syndromes: Overview of the management. https://www.uptodate.com/contents/search. Accessed May 5, 2025. Medical review (expert opinion). Mayo Clinic. June 10, 2025. Nimmagadda R. Allscripts EPSi. Mayo Clinic. Feb. 3, 2025.

Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect the connective tissues — primarily the skin, joints and blood vessels. Symptoms and severity can vary from person to person and depends on the type of EDS you have. Many people with EDS have: Overly flexible joints that sprain or dislocate easily. Skin that stretches more than usual and is fragile or slow to heal. Ongoing joint pain, fatigue, and digestive and nervous system symptoms are also common. These complex symptoms can affect daily activities and quality of life.

At your first visit to the Ehlers-Danlos Syndrome (EDS) Clinic in Florida, you receive a complete diagnostic evaluation for EDS. This includes a review of your medical history and a physical exam. Your healthcare professional may: Examine your skin and joints. Listen to your heart and lungs. Check your blood pressure, heart rate and breathing. If you have not had genetic testing , your team may recommend it based on your evaluation. At your second visit, your healthcare professional reviews your care plan, answers your questions and explains next steps. After your second visit, your care usually returns to your local healthcare professional. The EDS Clinic works closely with your local primary care professional and specialists to coordinate your ongoing care. Some people may return to Mayo Clinic if their condition changes or they need additional specialty care.