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15 Things Ehlers-Danlos Syndrome Warriors Have Learned to Love About Their Illness

Editor's Note

The quotes and names shared by the author have been used by their permission.

If you haven’t heard of Ehlers-Danlos syndrome (EDS) — you are not alone. EDS is a rare, incurable connective tissue disorder that attacks many systems of the body that is caused by a defect in collagen. With so many negatives associated with being diagnosed with Ehlers Danlos Syndrome including: chronic pain, chronic fatigue, joint dislocations, cluster headaches, bruising, bladder and gastrointestinal pain, low blood pressure and photo-sensitivity … I am going to share some positives other patients and I have learnt to love whilst living with EDS.

My Thoughts

1. I can do my own dress zipper up and down, which is super handy for getting ready.

2. I can use my hand as a comfortable face rest anywhere I go.

3. Ehlers Danlos syndrome has taught me not to judge other people on face value.

4. I can sleep in any position, pretty much anywhere.

5. I don’t need to buy Halloween face paint — the bags under my eyes are big and dark enough.

6. There’s never an itchy spot on my body I can’t reach.

7. I can type incredibly fast — which is helpful in meeting deadlines.

8. People who care about you will stay in your life and the rotten eggs won’t.

9. I have gotten back into some hobbies that have helped give me a purpose, such as art and blogging.

Other Patients’ Thoughts

10. “It makes me more understanding when others are struggling, and I can empathize.” — Robyn Frances Tipple-Smith.

11. “I love that I can educate people and make new friends with Ehlers-Danlos syndrome, known as ‘Zebras.’” — Abby Cappleman.

12. “It forces me to slow down and focus on what is really important. I get to spend more time with my kids than if I was busy all the time.” — Carol Youree Rothage

13. “I love that I look younger due to stretchy skin.” — Fiona Willis

14. “It makes me a great dancer.” — Justine Hills

15. “My skin is super soft, no moisturizer needed.” — Ashley Baliou.

Do you struggle with EDS and have learned to love something about your condition since you were diagnosed? If so, I would love to hear about it in the comments below.

Follow this journey on the Brains & Bodies blog.

This story originally appeared on the blog Brains & Bodies.

Photo by Mari Lezhava via Unsplash.

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