Ehlers-Danlos syndrome

Darcie expected to add epilepsy to her already long list of other diagnoses: migraine, anorexia, irritable bowel syndrome, autism, depression, anxiety, attention deficit/hyperactivity disorder, a fainting and dizziness problem called postural orthostatic tachycardia syndrome, or POTS, and a joint condition called hypermobile Ehlers-Danlos syndrome.

One condition she points to is hypermobile Ehlers-Danlos syndrome, or hEDS, in which a person’s joints have an unusually large range of movement.

It is one of 13 subtypes of Ehlers-Danlos syndrome; the other 12 subtypes cause biochemical changes in connective tissue, have a known genetic cause, are rare, and can be severe.

Since hEDS was identified as a mild form of Ehlers-Danlos syndrome in 1997, it has become the most common form of the disorder, despite no proven pathology or genetic cause.

Winn said that, in his own life, he suffers from chronic pain and hypermobile Ehlers-Danlos syndrome, which made it difficult to hold down a job and, on some days, even get out of bed.