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

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!



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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.

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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.

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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!

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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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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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