Issue link: https://tmcpulse.uberflip.com/i/856438
t m c » p u l s e | a u g u s t 2 0 1 7 16 Structurally Unsound Sarrah Hannon wants to demystify Ehlers-Danlos Syndrome B y M a r y V u o n g S arrah Hannon once led an active life of triathlons, marathons and rock climbing. Now she refrains from lifting a gallon of milk. Hannon, 30, lives with Ehlers- Danlos Syndrome (EDS), a group of genetic connective tissue disorders. The most abundant protein in her body, collagen, is failing her. "Imagine building a house out of rotting wood, rusty nails, and less dense concrete; this is what it is like to have a body with EDS," Hannon said. Often called an invisible illness because its effects are not discernible to the eye, EDS can cause complications in every organ. Collagen makes tissue strong and elastic, within a safe limit. But no such limit exists for Hannon, whose body cannot make or process healthy collagen. EDS has 13 subtypes, but only Hannon's type cannot be identified by a genetic test—hypermobile EDS, char- acterized by excessively loose joints and stretchy skin. Daily joint disloca- tion is common. Hannon lived with her symptoms for 25 years before an official diagnosis. She had her first knee surgery at age 11, when she tore cartilage doing gymnas- tics. She tore it again and again, each time resulting in more surgery. No one suspected a tissue disorder. Just reaching over her head can cause joint dislocation. She actively keeps her arms close to her torso. "When I open a door, I keep my elbow tucked into my hip or else my shoulder will dislocate," Hannon said. Because EDS ravages the whole body and saps so much energy, Hannon must plan her day with care and cau- tion. She wakes at 4 a.m. for work as a forensic toxicologist and takes the first of 39 pills before caring for her dogs. Hannon gets dressed based on how she feels—literally. Tender hips means it's a leggings day. If her hands are sore, she doesn't want to fuss with shirt buttons. If her costochondritis flares up, causing cartilage inflammation between her ribs, she wears a wire-free bra. Driving is exhausting. An early morning commute minimizes heavy traffic, and Hannon can monitor blind spots without too much neck move- ment thanks to concave mirrors. Before the drive home, she lies down to rest and consumes food with sugar or a caf- feinated energy tablet. She takes pain medication and another break after she gets home. Because Hannon's job involves Sarrah Hannon, whose condition leaves her with excessively loose joints, with her dogs at a dog park near her home.