Name of the medical condition and other names that it’s been known by

• Ehlers-Danlos Syndrome

• EDS

 

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of genetic disorders that affect the body's connective tissues. These tissues are like the glue that holds our body parts together, giving them strength and flexibility. In people with EDS, these tissues are weaker than they should be.

 

There are 13 different types of EDS, but they all share some common features. People with EDS often have very flexible joints that can bend more than normal. This can lead to joint pain and dislocations. Their skin might be stretchy and soft, and it can easily bruise or tear. Some people with EDS also have problems with their blood vessels, organs, or bones.

 

The most common type is hypermobile EDS, where people have super bendy joints. Another type, vascular EDS, is more serious because it can cause problems with blood vessels and organs.

 

EDS can affect people in different ways.

• Some might have only mild symptoms, while others have more severe problems.

• It can make everyday activities harder and sometimes cause pain or other health issues.

• However, with the proper care and support, many people with EDS can lead full and active lives.

 

How is it diagnosed?

• Doctors look at a person's medical history and family history
• They do a physical exam to check joint flexibility and skin stretchiness
• Genetic tests may be done to look for changes in specific genes
• Skin biopsies (small skin samples) might be taken to check the connective tissue
• Imaging tests like X-rays or MRI scans can help check for joint problems
• Blood tests might be done to rule out other conditions
• Echocardiograms (heart ultrasounds) may be used to check the heart and blood vessels

 

How is it treated?

• Physical therapy to strengthen muscles and improve joint stability
• Occupational therapy to help with daily activities
• Pain management techniques, including medications if needed
• Braces or splints to support joints
• Surgery in some cases to repair damaged joints or blood vessels
• Regular check-ups with different specialists to monitor overall health
• Lifestyle changes, like avoiding activities that might cause injury
• Counseling or support groups to help cope with the emotional aspects

 

Trend
• In the United States, it's estimated that about 1 in 5,000 people have some form of EDS. 

• This means roughly 66,000 people in the US have EDS, based on the current population.

• As awareness and diagnostic techniques improve, more people might be diagnosed with EDS in the future.

 

History
Ehlers-Danlos Syndrome has been known for a long time, even though people didn't always call it by that name.

 

Hippocrates first described someone with very stretchy skin in 400 BC. However, the syndrome got its name from two doctors who described it in more detail in the early 1900s: Edvard Ehlers from Denmark and Henri-Alexandre Danlos from France. 

 

Over the years, doctors have learned more about EDS and discovered different types. In 1997, they came up with a new way to classify the different types of EDS, which has been updated since then as we've learned even more about the condition.

 

Source of Information

• National Library of Medicine, Medline Plus

• National Library of Medicine, National Center for Biotechnology Information

• National Organization for Rare Disorders (NORD)

• Mayo Clinic

 

For informational purposes only. Consult a medical professional for advice.