If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the finalists. Estimates vary, but it’s thought that about 1 in 5,000 people have EDS.
Part of the reason EDS is so hard to identify is that it’s actually a group of inherited disorders that weaken the connective tissues supporting skin, bones, blood vessels, and other organs. Symptoms can vary, but loose joints and stretchy skin that bruises easily are common. Beyond that, there is little to help patients or physicians to pinpoint EDS.
Lorraine McCarthy knows that better than most. The Irish native is a former model, and was once selected to represent Dublin’s Therapie Clinic. But her beauty masks a lifetime of suffering.
At only 30 years old, she’s lived with more physical pain than most people experience in a lifetime. And until a few years ago, she had no idea that EDS was to blame.
Lorraine—who is only one of an estimated 130 people in Ireland with EDS—feels like the signs were there since she was a baby…but no one had any idea what they meant. She describes herself as “a floppy baby” who was late in walking and developing motor skills. She was very sick as a child, frequently fighting illness and infection and struggling with a lack of energy.
As an adult, she was told her condition was endometriosis, but the problems continued to pile up: Fevers, dislocations, Raynaud’s Syndrome, angioedema, migraines, spasms, dysautonomia…the list went on. But Lorraine came to accept these as her normal—so much so that when she met her husband, he was alarmed by the amount of pain she shrugged off on a daily basis.
It wasn’t until much later, when she was in her mid-20s, that Lorraine was diagnosed with Ehlers-Danlos Syndrome.
By then, Lorraine had already given up a career as an air hostess because of her health. Today, she does not work at all. But she is still a model; a role model. After years of frustration looking for answers and treatment, she now speaks about her experiences to help turn the spotlight on a condition even many doctors haven’t heard of. She believes there are many more people out there, just like her, desperately looking for answers.
She also participates in the Ehlers-Danlos Syndrome awareness page and Facebook group, connecting with others and swapping experiences and support. Despite the progression of her condition and the lack of a cure, she is upbeat about the future.
And that’s what makes Lorraine truly beautiful: her passion to live life in full, regardless of what EDS has taken from her and her determination to use her experiences to help others.