A rare disease diagnosis can often take many people by surprise. The diagnostic process can be long and tough; managing symptoms is often no less easy. Ellen Inouye discovered this firsthand in 2017. At the time, Inouye was 17 years old, a high school senior who competed in gymnastics tournaments. Then, suddenly, Inouye was hit by a variety of uncomfortable symptoms. She lost the ability to walk, to speak, and largely to move. Doctors diagnosed her with Ehlers-Danlos syndrome (EDS), shares Rhett Rodriguez of Your Central Valley.

Suddenly, Inouye’s life changed. No longer was she competing in gymnastics or preparing for the next stage of her life. Instead, she found herself wondering what came next—and facing a whole host of surgeries. Over the last six years, Inouye has undergone multiple neck and spine surgeries. She now has somewhat more mobility. 

Driven to translate her experience into something positive, Inouye turned to crafting. She creates specialized soaps for others with EDS that overcome sensitivities to certain materials. Inouye also hand-stitches blankets—each containing more than 20,000 stitches. She sells her creations at events like the Central Valley Asians Crafts Fair. No matter what comes next, Inouye feels like she has found purpose in her life, and will continue moving forward—stitch by stitch.

About Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome refers to a group of inherited connective tissue disorders caused by genetic defects in collagen. The primary complications in EDS involve the blood vessels, skin, bones, and muscles. There are thirteen different subtypes of Ehlers-Danlos syndrome, each of which may present with different symptoms. An estimated 1 in every 2,500-5,000 people worldwide live with EDS.

While symptoms may vary depending on subtype, there are some commonalities across the spectrum of EDS. The potential range of symptoms can include, but is not limited to:

• Soft, velvety, and highly elastic skin that tears easily
• Easy bruising
• “Cigarette paper” scars that heal poorly
• Loose, unstable, and highly flexible joints
• Frequent joint sprains or dislocations
• Finger, neck, and spone deformities
• Varicose veins
• Pregnancy complications

Right now, there is no cure for EDS. Treatment is focused on managing symptoms, preventing bodily damage, and sustaining a high quality of life. People with EDS may receive braces, medications, physical therapy, and surgery.