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t m c » p u l s e | a u g u s t 2 0 1 7 17 ample paperwork and computer data analysis, she has a standing desk and wears prism glasses to avoid bending her neck. But she loves her career, and doesn't want to quit. At least 13 medical specialists at the Texas Medical Center help her navigate and manage EDS symptoms. Shweta Dhar, M.D., medical director of the Adult Genetics Clinic at Baylor College of Medicine, is her traffic cop. "She's in charge of making sure if I have a new symptom, she's sending me to the right doctor," Hannon said. Dhar runs a monthly EDS clinic. She has an 18-month waitlist with close to 150 prospective patients from Texas and surrounding states. Hypermobile EDS is difficult to diagnose because it devastates the whole body and causes numerous symptoms. Clinical criteria for diagnos- ing hypermobile EDS was updated this year by The International Consortium on Ehlers-Danlos Syndromes & Related Disorders, the first time in two decades. "On the rare occasion I allow myself an ER visit," Hannon said, "I usually bring journal articles and/or have web- sites ready to explain my EDS, because they simply don't remember it from medical school." Dhar didn't encounter many EDS patients during her medical genetics residency. Within the last eight years, however, more patients began detailing the same non-associated complaints. They include gastrointestinal prob- lems, muscle pain, easy bruising and bleeding, headaches/brain fog, sleep disturbances and menstrual problems. Although EDS can afflict men and women equally, it appears more women are affected due to their hormones, with symptoms typically starting right after puberty, Dhar said. Women generally have weaker muscle mass, and mus- cles must work in overdrive to control hypermobile joints. An estimated 1 in 5,000 individuals has a form of EDS. This is not a condition that nec- essarily causes permanent disability, Dhar said. "We try to minimize the ups and the downs." Hannon lived in painful confusion for decades. After she almost fainted at a job—just one of many EDS episodes— a colleague with a medical degree urged her to give him a detailed medical history. "He said, 'Hey, just for fun, tell me everything that's ever been wrong with you,'" she recalled. It took her 1 ½ hours. He suggested possible causes, includ- ing EDS. "I thought I had heard it before," Hannon said. "It's genetic. My cousin just got diagnosed with this." Her dad was diagnosed this year. Hannon underwent her 10th surgery in February. Fraser Henderson, M.D., a Maryland-based neurosurgeon, has per- formed four spinal surgeries on her. He recently fused her cervical spine from C1 to C7 after diagnosing her with cranio- cervical instability. "I was dislocating my C1 on my C2 and endangering very vital vertebral arteries," Hannon said. Henderson has encouraged Hannon to fuse her skull to her cervical spine, but she fears that could end her ability to work. After neck sur- gery, Hannon began working with Monica Shroff, a physical therapist at Memorial Hermann Sports Medicine & Rehabilitation who treated her first patient with EDS a few years ago. "It can be a little different than treating other people," said Shroff, who offers more rest breaks to patients with EDS. Often, EDS patients must learn entirely new ways of doing something. Proper form and quality of movement are critical, Shroff said. Lifestyle modifications are vital, as well. Hannon drinks with straws because she can't fully tilt her head. She sits on the floor to eat dinner at her cof- fee table or on the couch with a propped tray, positions that don't require her neck to bend. Her boyfriend handles most household chores, but when she lived alone, dirty dishes would collect for a week, laundry for up to a month, until she had the energy to tackle them. Compared to traditional chiropractors, The Joint offers a much more practical solution to keeping your spine healthy and your body balanced. Walk in, get adjusted and be on your way • Quality chiropractic care • No insurance hassles • No hidden fees • No appointments needed • Open evenings and weekends VISIT THEJOINT.COM TO FIND A CLINIC NEAR YOU Initial visit, includes consultation & exam Adjustment Be Chiro- Practical TM West U 3177 W. Holcombe Blvd. Houston, TX 77025 (713) 588-0858 *Offer valued at $39. Valid for new patients only. See clinic for chiropractor(s)' name and license info. Clinics managed and/or owned by franchisee or Prof. Corps. Restrictions may apply to Medicare eligible patients. Individual results may vary. © 2017 The Joint Corp. All Rights Reserved. Even "showers wipe me out," Hannon said. "My blood pools in my feet since my blood vessels are lax. Plus, putting my arms above my head to wash my hair is super painful." Sleep is a big priority on weekends. Hannon "may spend one afternoon at the dog park," she said, "but otherwise it's all about recovery for me." Yet she uses her limited energy to spread the word about EDS. May is widely recognized as Ehlers-Danlos Awareness Month and both this year and last, Hannon convinced Texas Gov. Greg Abbott to sign an official procla- mation recognizing this special month in the state of Texas. "It took me 25 years of pain and confusion and doctors and people not believing me before I finally was diag- nosed," she said. "I want to raise aware- ness so that the next person doesn't have to wait 25 years before they finally find out that they are not crazy, they are not hypochondriacs; they have a genetic disorder and they must act now to preserve what they have." Mary Vuong is a freelance writer living in Houston. Showers wipe me out. My blood pools in my feet since my blood vessels are lax. Plus, putting my arms above my head to wash my hair is super painful. — SARRAH HANNON Hannon waits for physical therapy at Memorial Hermann Sports Medicine & Rehabilitation.

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