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Help Karrie access her home and community

In the past few years, Karrie has received life-changing diagnoses, including Chiari-Syringomyelia and Ehlers Danlos Syndrome. EDS clicked all the pieces in place as to why she had experienced chronic pain, joint dislocations, and mysterious illnesses her whole life & led to the diagnosis of her aortic dilation and mast cell activation syndrome.
Syringomyelia — cavities in her spinal cord — explained a sudden cascade of symptoms such as ataxic gait, neuropathic pain, thenar wasting, poor balance, and loss of protective sensation.

Updates (7)

April 20, 2020

Just a quick update that I was finally tested for COVID19. I have a followup on Tuesday (via telemedicine).

April 11, 2020

I am sorry for the delay in updates! I hope everyone is doing well and keeping safe! Generous donations helped pay for my most recent insurance premium, and I cannot thank you enough! They also helped pay for medications, which was so helpful in this time of COVID19 as I did manage to get a few months of some of them to avoid too many trips to the pharmacy.

I apologize for the delay in updates. I came down sick, possibly with COVID (tests in Iowa are very hard to get) or possibly with some other respiratory illness. Flu & strep were negative. It feels like pneumonias I’ve had before but also very different. The fatigue & lung pain have been crushing.

I am working toward paying May premium and hopefully getting an all-terrain rollator since the sidewalks where I live are not in good repair. All appointments are currently on hold, though I am also fundraising for a telehealth appointment for a genetic counselor and some further testing. Otherwise, just resting for now.

So sorry I can’t write messages to each individual. This platform shares your encouraging messages (thank you!), but there isn’t a place for me to click to reply. Please know how grateful I am for all your help. STAY SAFE & Stay Home if you can! Much love, Karrie

Photo Galleries (3)

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May 18, 2020

Accessibility is SO important. I really appreciate your Twitter feed. Sorry things have been so hard

Patricia Lapointe

April 9, 2020

Wishing you well from afar


April 6, 2020

Long time reader, haven't donated yet. Saw your tweet about having a grocery break and it was so awful and relatable job its mundanity that I needed to donate. I know it's not much but hopefully it'll help you get through to the next frustration or trial.


April 1, 2020

Thinking of you. As a fellow hEDS dear human you've been so relatable and informative. I appreciate your writing and disability work.

Melanie Casey

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