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Jameela Jamil Shares Photo Highlighting Nighttime EDS Symptom

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When you live with Ehlers-Danlos syndrome (EDS), what may seem like a simple, everyday activity to most people can cause a range of issues, from dislocated or popping joints to the exhaustion of doing ordinary things like going for a walk, rolling over in bed or pushing a grocery cart. “The Good Place” actress Jameela Jamil, who revealed in March she has hypermobile EDS, took to Twitter Thursday to share one way she copes and invited other zebras to do the same.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

EDS is a genetic disorder that impacts the strength and amount of connective tissue in your body. EDS can affect anywhere in your body, commonly in your joints, skin or organs, which leads to Ehlers-Danlos symptoms such as full or partial joint dislocations, fragile skin, easy bruising, chronic pain, fatigue and digestive issues.

Jamil shared a photo of her socked feet up in the air to demonstrate how she copes with pain and swelling in her joints at the end of the day. After sharing her nighttime EDS coping skill, she invited others to chime in with their own experiences with EDS.

“An EDS thread. EDS is having to lie with your legs above your head every evening because of the pain and swelling from being on your feet,” the actress tweeted. “What is your EDS experience?”

Jamil’s fans rose to the occasion and shared other ways their lives are affected by EDS symptoms, related conditions like postural orthostatic tachycardia syndrome (POTS), the challenge of getting an EDS diagnosis, living with an invisible illness, and even perspectives from caregivers.

“EDS is lots of bruising for no reason, subluxing fingers while taking notes in class, echocardiograms and pain management,” wrote Twitter user @AwkwardKelley. “EDS is pain meds and nausea and tight muscles and fatigue and fainting and ER visits. EDS is explaining to everyone in your life what EDS is.”

If you’re living with EDS, know you’re not alone. There are many other warriors out there who know exactly what you are going through. To learn more about EDS and get support, check out The Mighty’s Guide to Ehlers-Danlos syndrome, including EDS symptoms, how to get an EDS diagnosis, treatment options and resources.

Header image via Jameela Jamil’s Twitter

Originally published: September 26, 2019
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