Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect connective tissues, which provide strength and elasticity to skin, joints, blood vessels, and other organs. The signs of EDS can vary widely but generally revolve around problems with joint flexibility, skin texture, and tissue fragility. These signs often appear early in life, sometimes even at birth, and can affect many parts of the body.
One of the most noticeable signs is **joint hypermobility**, where joints move beyond the normal range. People with EDS often have very flexible or “bendy” joints that can dislocate or sprain easily. This hypermobility can cause frequent joint pain, instability, and sometimes early onset arthritis. It may also lead to muscle fatigue and difficulty with coordination because the joints don’t provide the usual stability the body expects. This can make simple activities like walking, writing, or holding objects tiring or painful. Some people with EDS are called “double-jointed” or “bendy” because of this unusual flexibility.
The **skin** in EDS is often soft, velvety, and unusually stretchy. It can stretch much farther than normal skin and then return to its original shape. However, this skin is also fragile and prone to bruising easily, even with minor bumps or injuries. Wounds may heal slowly and leave behind wide, thin, or “cigarette paper” scars that look different from typical scars. Sometimes, the skin can be thin enough that veins are visible underneath.
Other common signs include:
– **Chronic pain**: Many people with EDS experience ongoing joint and muscle pain that can range from mild to severe. This pain often worsens with activity and can be difficult to manage.
– **Fatigue**: Feeling unusually tired is common, even after normal daily activities. This fatigue is not due to laziness but is a real physical symptom linked to the body’s struggle to stabilize joints and manage pain.
– **Easy bruising and bleeding**: Because connective tissue supports blood vessels, people with EDS may bruise easily and sometimes have bleeding problems, including nosebleeds or heavy menstrual bleeding.
– **Poor wound healing and abnormal scars**: Cuts and injuries may take longer to heal and often leave behind unusual scars.
– **Flat feet and foot pain**: Many with EDS have flat feet or unusual arches, which can cause discomfort and difficulty finding comfortable shoes.
– **Dental issues**: Problems like fragile gums, enamel defects, and increased risk of gum disease can occur.
– **Nerve-related symptoms**: Some experience numbness, tingling, or nerve pain due to nerve compression or damage.
– **Autonomic dysfunction**: Symptoms like dizziness, light-headedness, and fainting can happen because of problems with the autonomic nervous system, which controls involuntary body functions.
– **Gastrointestinal problems**: Issues such as acid reflux, slow digestion, or hernias may be present.
– **Other connective tissue-related signs**: These can include hernias, prolapses (such as anal prolapse), and sometimes lung problems like spontaneous pneumothorax (collapsed lung).
Some unique signs that may be noticed include the ability to perform **Gorlin’s sign**, which is touching the tongue to the nose, something that is rare in the general population but more common in EDS.
Because EDS affects connective tissue throughout the body, it can also be linked to other conditions such as mast cell activation disorders, which cause allergic-like symptoms, and mental health issues like anxiety or mood disorders. Some people with EDS may also have sensory sensitivities, such as being unusually sensitive to loud noises, bright lights, or certain textures.
In children, these signs can be mistaken for clumsiness, growing pains, or even behavioral problems because the symptoms are often subtle or misunderstood. Many people with EDS report that doctors initially dismissed their symptoms or attributed them to othe
