Ehlers-Danlos Syndrome: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Ehlers-Danlos Syndrome?
A geneticist, a doctor who treats inherited conditions, often helps diagnose Ehlers-Danlos syndrome. A rheumatologist, a doctor who treats joint and connective tissue problems, may help with joint problems. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome (EDS) is a group of rare inherited conditions that affect connective tissue. Connective tissue gives support to the skin, tendons, ligaments, blood vessels, internal organs and bones.
There are 13 types of EDS, and most are rare. Hypermobile EDS is the most common type. EDS appears to affect at least 1 in 5,000 people worldwide.
Symptoms
Symptoms depend on the type. For some people the condition is mild, and for others it can be disabling. Common signs include:
- Loose joints that move more than usual, called joint hypermobility.
- Joints that dislocate easily, and joint pain.
- Soft, velvety skin that is very stretchy and fragile.
- Skin that bruises easily.
In classical EDS, wounds are slow to heal and leave wide scars. Classical EDS can also cause hernias and organ prolapse.
Hypermobile EDS can also cause extreme tiredness, digestive problems such as heartburn and constipation, and dizziness and a faster heart rate after standing up.
Vascular EDS is rare and is often considered the most serious type. It can cause blood vessels and organs to split open and lead to life-threatening bleeding.
Causes and who gets it
Changes in at least 20 genes have been found to cause the Ehlers-Danlos syndromes. Many of these genes make collagen, which gives structure and strength to connective tissue. The gene changes disrupt how collagen is made or processed, and this weakens connective tissue.
Some types are passed on when one copy of the changed gene is enough to cause the disorder. Other cases are new gene changes in people with no family history of the disorder.
In other types, parents are usually carriers who have no signs of the disorder.
How doctors diagnose it
An exam may show excess joint looseness and joint hypermobility. It may also show soft, thin, or very stretchy skin.
Tests may include collagen typing on a skin biopsy sample. Doctors may also do collagen gene testing for some types, and a heart ultrasound called an echocardiogram.
For hypermobile EDS, diagnosis is based on your medical history and a physical exam. A genetics specialist may do a genetic blood test to confirm a rare type.
Treatment
There is no specific cure for EDS. Individual problems and symptoms are evaluated and cared for. Physical therapy is often needed.
A physiotherapist can teach exercises that help strengthen joints, avoid injuries and manage pain. An occupational therapist can help you manage daily activities. Counseling may help if you struggle to cope with long-term pain.
For certain types, regular scans can find problems with internal organs.
Be careful with activities that strain your joints or risk injury. You may be advised to avoid heavy lifting and contact sports. Swimming or pilates may be recommended to stay fit.
Support groups can help. The Ehlers-Danlos Society is one place to start.
When to see a doctor
See a doctor if you or your child has symptoms of EDS. You do not usually need to worry if you only have a few symptoms that cause no problems.
Vascular EDS can cause blood vessels or organs to tear and bleed. Call 911 or go to the emergency room if you have sudden, severe pain anywhere in the body, severe belly pain, fainting, or bleeding that will not stop.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. A direct primary care doctor can start an evaluation and review your symptoms. They can also help you coordinate visits with genetics, joint, and physical therapy teams and keep up with long-term follow-up.
Common questions
Is there a cure for Ehlers-Danlos syndrome?
No, there is no specific cure for EDS. Care focuses on each problem and symptom, and physical therapy is often needed.
Can people with EDS have a normal life span?
In general, yes. People with EDS generally have a normal life span. People with the rare vascular type are at greater risk for rupture of a major organ or blood vessel.
Is Ehlers-Danlos syndrome inherited?
Yes, it can be inherited. Other cases are new gene changes in people with no family history. A person with EDS can only pass on the same type of EDS to their children.
What is the most common type of Ehlers-Danlos syndrome?
Hypermobile EDS is the most common type. People with it may have loose, unstable joints that dislocate easily.
Sources
- MedlinePlus - Ehlers-Danlos syndrome
- MedlinePlus Genetics - Ehlers-Danlos syndrome
- NHS - Ehlers-Danlos syndromes
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
