About Ehlers-Danlos Syndrome
The symptoms and prognosis vary depending on the type of EDS diagnosed, the age at diagnosis and the individual.
EDS has many secondary conditions such as dysfunction of the autonomic nervous system and gastrointestinal issues.
The symptoms can in some cases be extremely disabling, impacting patients’ school work, career progression, relationships and mental health due to the nature of the disorder.
Early diagnosis leads to early intervention which can dramatically improve a patient’s quality of life.
Genetic testing is available for each of the subtypes except Hypermobile EDS which is diagnosed through clinical investigations. Unfortunately, Hyper mobile EDS is considered vast ly under diagnosed in Ireland as there is no clinical Ehlers-Danlos syndrome specialist appointed by the HSE.
Life expectancy can be shortened for those with the Vascular EDS due to the possibility of organ and vessel rupture. But life expectancy is usually not affected in the other types.
There can be a wide or narrow range of severity within a family, but each person’s case of EDS will be unique.
While there is no cure for the Ehlers-Danlos syndromes, there is treatment for symptoms and there are preventative measures that are helpful for most.