May Awareness Month: EDS and my life

May Awareness Month: EDS and my life

May is national Ehlers Danlos Syndrome awareness month. EDS is a genetic connective tissue disorder that affects many different body systems. The international symbol for EDS is the zebra. EDS is a rare disorder, like a zebra is rare compared to a horse.

I struggle with a hypermobility syndrome, most likely hypermobile EDS. Most of my joints move beyond a normal range of motion, causing injury and chronic pain. I also have gastrointestinal symptoms, respiratory symptoms, and eye problems. I have made a list of some of the ways EDS affects my life. I especially struggle with severe chronic pain. I want to help raise awareness of this syndrome for better medical treatments and public understanding.

1. My bendy joints help me to move.

My joints are flexible, and I have always enjoyed stretching and yoga. It is easy for me to get up and down from the floor. I am quite comfortable sitting in lotus for meditation. My hypermobile ankles give me a good, strong kick when I swim. Swimming is one of my favorite exercises, soothing my sore body.

2. Sports injuries are a constant struggle for me.

My hypermobile ankles and feet hurt when I run. I have suffered countless sprains because of the weak connective tissue in my ankles. Sometimes I sprain while walking around during my daily life. I have undergone complicated ankle surgery that left me still in pain. I have spent years in physical therapy. But I can rock a pair of crutches! Ehlers Danlos means that some days I walk and look normal, other days I have to use crutches or a cane to get around. read more

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