Ehlers-Danlos syndrome is a group of genetic disorders that affect the body’s connective tissues that support the bones, joints, blood vessels, organs, and tissues. The primary type of Ehlers-Danlos is known as joint hypermobility syndrome or JHS. Hypermobility means the joints move farther and more easily than most people’s joints. Hypermobile people can often do tricks that look like contortion and hypermobility and are often valued in gymnasts and dancers. Sometimes, these people have chronic joint injuries due to hypermobility and may even have joint dislocations or popping out of the socket. Hypermobile type Ehlers-Danlos syndrome occurs in 1 in 5,000 people worldwide, but there are rarer types of Ehlers-Danlos that occur in 1 in 40,000 people. Rarer types of Ehlers-Danlos syndrome may show signs and symptoms that include soft-velvety skin, bruising easily, and bleeding problems.
- Weak muscles
- Chronic joint pain and stiffness
- Hypermobile joints (neck, shoulders, back, hips, knees, ankles, wrists, and elbows)
- Upper back pain and lower back pain
- Mitral valve prolapse and uterine prolapse
- Hernias and gastroesophageal reflux disease (GERD)
- Skin bruises may appear without any cause
- Dry mouth or constant thirst, often with a craving for salty foods.
Many people with JHS also have problems with their autonomic nervous system, the part of the nervous system that regulates circulation, breathing, and digestion. This can lead to symptoms such as lightheadedness, palpitations, and digestive problems. They can often find it difficult to adjust to both cold and warm temperatures. There is an increased incidence of allergies and asthma in people with JHS. Muscle strains and spasms are common. Any repetitive movement, such as walking, lifting, or carrying can be painful. Simple activities of daily life like standing or sitting, cleaning a kitchen counter, or bending down to pick up laundry can be painful.
People with JHS are more prone to get problems of the spinal column like disc herniation, slippage of a vertebra, etc. These cause severe back pain that may radiate to the legs.
They are more prone to get osteoarthritis and earlier than others. Inflammation of the rib cage, costochondritis may occur leading to severe chest pain. People with JHS may have neuropathic pain, which may be felt as a burning, stinging, tingling, shooting, and numbing, even without disc herniation Increased incidence of bone-thinning – osteoporosis and osteopenia. People with JHS often struggle with fatigue. They have problems sleeping and may have chronically poor sleep The chronic pain, delayed diagnosis, and fatigue may lead to concurrent depression. An increased incidence of anxiety problems has been found in people with JHS by some researchers. The genetic link, if any, has not been found yet.