Prognosis
Patients with Ehlers-Danlos syndrome generally have a normal life expectancy. However, the disease is progressive, i.e. it leads to an ever worsening of the health condition.Skin wounds and dislocations of the joints impair the patient’s quality of life, while ruptures of the large vessels can be life-threatening. Ehlers-Danlos syndrome is a chronic disease for which there is still no causal treatment and thus no cure.
This means that, according to the current state of medical technology, there is no possibility of doing anything about the causes of Ehlers-Danlos syndrome and curing it completely. Unfortunately, there is also still no way to fight and treat the symptoms that occur. One can only urge the affected patient to always take care in everyday life not to put too much strain on the joints and to avoid injuries to the skin if possible.
Surgical interventions should only be carried out in an emergency and if no adequate alternatives exist. In most cases, it proceeds progressively with an increasing worsening of the symptoms and impairment in the everyday life of the patients. Depending on the type of disease, the disease has different effects on the life of the patients.
The changes in the joints sometimes lead to arthrosis and arthritis in early childhood, so that children learn to walk later and the feet may possibly become malformed. Due to the increased risk of retinal detachment or retinal hemorrhage, vision is also at risk. The extent to which the symptoms are ultimately pronounced in each individual depends strongly on the type of Ehlers-Danlos syndrome and also varies greatly within the individual subtypes.
Life expectancy is normal for most types of Ehlers-Danlos syndrome. However, in patients with Ehlers-Danlos syndrome type IV, which affects the vessels, life expectancy is significantly reduced due to serious complications, such as the risk of spontaneous rupture of an artery, especially the aorta (rupture of the aorta) or the colon. For women, it is about 37 years and for men 34 years. Ehlers-Danlos syndrome type VI is also associated with a reduced life expectancy.
