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.Ehlers-Danlos Syndromes

My current work-in-progress painting focuses on Ehlers-Danlos Syndromes and the associated pain that those who are diagnosed suffer (myself included). I am hoping that people will share;

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• A written description of the physical, emotional, or mental pain that is a result of their condition. For example, “My pain feels like all my joints have sand between them, every little motion radiates from the source across my body.”

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• A personal experience of the difficulties in getting a diagnosis, or in having your symptoms/pain recognized. I know that many of us have a frustrating time getting medical professionals to LISTEN to us and take us seriously.

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• If you have a loved one that is diagnosed with EDS. How have you witnessed it affect their lives, how does it affect your life? How does it affect your relationship with them?

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• Any other anecdote or story related to EDS that you think should be told.

Any information, accounts or stories are intended to be submitted anonymously. Please try to avoid using names.

Share your experiences

By submitting information via this form, you are granting me permission to use all or part in the creation of a painting. Depending on submissions, yours may not be used. Any names and/or places will be redacted.

Thanks for submitting!

You are welcome to submit this form as many times as you like to tell all of your experiences.  

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