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What Helps Ellen, 71, With Ehlers-Danlos Syndrome

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

With our ongoing “What Helps Me” series, The Mighty is leaning into what sets us apart from other health sites: We aim to provide real health advice from real people who live it.

In this spirit, we asked our community for the best insights and tips they’ve developed for managing their conditions. As always, they responded with their unique health stories and we are happy to pass along their well-tested resources to you.

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

Responses have been lightly edited for length and clarity.

Today, we meet Mighty member Ellen. She is 71 years old and lives with Ehlers-Danlos syndrome (EDS).

Ellen, what helps you?

A white woman with blue eyes wearing a blue shirt and sunglasses in her hair smiles in the sunshine.

THE MIGHTY: What helps you most when your condition affects your physical health?

ELLEN: Trying to still find a way to live with purpose and meaning while addressing all that is in my limited control with an out-of-control condition. Advocating is a lifeline for me.

What helps you most when your condition affects your mental health?

Taking time to start each morning running through what I do have in my life that I am grateful for. Despite the hard times, there is still good around me and in my life.

How do you cope when your normal self-care isn’t working?

I try to remind myself that tomorrow is a new day. Due to living with constant subluxations, I go to manual physical therapy to get my body into correct position. I then go back to working on strengthening the muscles that hold my body together — ligaments and tendons are affected by EDS.

Thank you to Ellen for her contributions to our community. Did you find this helpful? Add your gratitude in the comments.

If you want to tell us what helps you, you can complete our survey here.

Image via contributor.

Originally published: May 2, 2022
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