Life with Ehlers-Danlos Syndrome
Diana was hyper-flexible as a child. As with many “double jointed” children, she showed off her abilities. “In my youth, I often entertained friends with all my ‘tricks.’ I grew up thinking most people could do these things with their joints.”
But as the years went on, Diana began to suffer from chronic pain. Even when she stopped doing “tricks,” the pain persisted. At 40 years old, she found out why: she had a rare connective tissue disorder called Ehlers-Danlos Syndrome. It enabled her to manipulate her joints in ways that most people can’t, but this caused irreversible damage along with chronic pain. Diana describes the condition as “being held together with paste instead of superglue.”
Grasping for Help
After receiving the diagnosis, Diana needed to find out more and receive treatment. Unfortunately, some of her doctors caused more hurt than healing. They didn’t know much about Ehlers-Danlos Syndrome, and a lack of understanding often led them to questionable decisions. In some cases, the doctors would “push patients to do the very ‘tricks’ that were so damaging and painful.”
On top of the lack of knowledge, surgery can be dangerous for Diana. Anesthesia doesn’t always work as intended. There’s a high risk of her bleeding out. Stitches don’t always hold.
Diana’s best option for treatment was at National Institutes of Health (NIH) in Maryland. Normally, she would drive to and from the appointments. But as time went on, it was almost too painful to move. And having someone else drive wasn’t an option either: “The ride itself was painful and it took up to three or four days to recover.”
She needed to find another way to travel.
Flight of Opportunity
Mercy Medical Angels’ volunteer pilot program gave Diana the means to travel back and forth to NIH. “Without it,” she says, “there’s no doubt that I’d be in a wheelchair permanently.”
Diana considers herself “lucky” to have found doctors who know what they’re doing. “To see my doctors and surgeons in Maryland has saved my life and retained the quality of life I do have.” In addition to her treatment, Diana also held a conference about Ehlers-Danlos Syndrome for medical staff, along with workshops for patients and families.
“Angel Smiles and Genuine Compassion”
Diana’s gratitude overflows when she tells about the volunteer pilots who have flown her to NIH. “Down to every single one I have flown with, they are there with a smile, letting you know upfront that they are there for you.” Diana also thanks MJ, who coordinates the volunteer pilot flights: “She’s one of the real life angels of Mercy Medical Angels.”
“It’s those angel smiles and genuine compassion that stay with me,” says Diana. With help from Mercy Medical Angels, Diana can rest assured that everything will stay connected.