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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 (5)

January 20, 2020

Just a quick update that I was able to pay my February 2020 insurance premium and I posted the receipt in a photo album. This was made possible by my fundraiser as a large premium increase is threatening to force me to cancel coverage. Every month is going to be tenuous like this, I fear, though hopefully I can keep it going each month while working toward home modifications, testing and mobility aids.

One huge problem right now: I am fighting with insurance over my epilepsy medication, which is due for refill. It will cost $1,122 until insurance processes an appeal. They covered it all through 2019 without much issue, but for some reason, they are not processing the appeal in 2020. It’s odd because the formulary for 2020 shows Tier 4 with no Pre-Auth, and yet, they are treating it as non-formulary. I can apply for assistance, but it takes time to process the paperwork. Stopping an epilepsy medication suddenly is dangerous. Seizures, death, etc., can result. And my medication, while amazing, is my last ditch. Others either didn’t work or caused severe psychiatric & physical side effects.

Hopefully I can get this resolved soon, but I am running out of medication, and last time it happened, I had seizures that caused a host of issues (losing a tooth, cracking others, injuries, including head injury).

THANK YOU SO MUCH for boosting, commenting, donating, and just generally being so supportive. I appreciate it more than I can say.

January 17, 2020

A huge thank you to everyone who has boosted, donated or said a kind word!

Help Hope Live has been incredibly supportive to work with & they handle all the funds so you know they go exactly where stated.

We are aiming to get some videos and photos posted soon to show the plans for the modifications. At the moment, we are in a snowstorm and hunkered down indoors.

Hope you all are safe and having a wonderful new year.

Photo Galleries (3)

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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

March 28, 2020

Wishing you well as you fight this respiratory illness

Emily Baumbach

March 27, 2020

Love you so much, Karrie ❤️

gayle brandeis

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