Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

editor's choice

Happy Memorial Day Weekend Patient Worthians!

Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat “normal”. But before you start your vacation, be sure to check out this week’s top articles!

Ehlers-Danlos can be painful and unpredictable. This week, we have a letter from an EDS patient to her condition, and a story about a brave mother combating undiagnosed EDS. Additionally, we have an event announcement that you might be interested in and a brief on this month’s Strawfie Challenge!

So relax and enjoy this week’s Editor’s Choice!




Dear Ehlers-Danlos Syndrome: A Letter From Your Host

PW Contributor Karina writes a heartfelt and candid letter to her disease.

Check out what she has to say to her condition.

40 Years and an Aneurysm… Then Finally an EDS Diagnosis

Imagine living 40 years with crazy symptoms and not getting any help from doctors.

That’s what Bonnie Wheeler went through. Find out what she did to finally get her diagnosis and the treatment she needed.


Syngap-1 First International Conference!

The end of November is a time for family and holiday celebrations.

But it’s also a time for the Syngap-1 First International Conference in Texas. Read here for the details!


A Strawfie is a Selfie While Breathing Through a Straw for Cystic Fibrosis Awareness

As you guys know, we have been teaming up with Breath With Me to promote CF Awareness Month and the Strawfie Challenge!

Check out this brief intro into the campaign and find out how you can participate!




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