Help Keilani Battle cEDS & Massive Medical Debt

From the time she was a kid, Keilani Lime suffered more bumps and bruises than most. An avid soccer and basketball player, she always seemed to be injuring one limb or another — a broken finger here, a dislocated shoulder there. Her doctors just thought she was just accident-prone, never imagining that her ever-growing list of maladies was actually a sign that something was seriously wrong.

In her 20s, she stumbled into a run of mysterious and seemingly unrelated health issues that bewildered one doctor after another. It was only after several years and countless surgeries that an underlying culprit was finally discovered. In 2021, Keilani was diagnosed with classical Ehlers-Danlos syndrome.

EDS is a rare, genetic connective-tissue disorder that affects, well, everything. In short, Keilani’s body doesn’t produce collagen correctly. Collagen is the glue that holds your body together. If it doesn’t work, it causes all kinds of problems, from the sort-of funny (stretchy skin, extra bendy limbs) to the annoying (skin that bruises easily, joint dislocation) to the downright scary, like organ prolapse.

In the past three years alone — basically since she turned 30 — Keilani has endured well over 50 surgeries and procedures, including bilateral hip replacements, brain surgery, spine surgery and, just months ago, a hysterectomy. Before the year is out, she’s expected to go under the knife a few more times, both for routine procedures and a likely revision to one of her hip replacements.

As anyone familiar with the American healthcare system might imagine, she has accrued debilitating debt along the way. Some of it stems from copays, deductibles and procedures insurance doesn’t cover. But there are smaller, hidden costs of being sick, too, that can be just as daunting as they add up: medications, equipment, travel and dietary supplements, to name a few. As if that wasn’t enough, Keilani was laid off from her job in 2022 as she was recovering from brain surgery. She has been unable to work since.

Through it all, Keilani has maintained her ineffable spirit and effervescent charm. She’s bravely continued her work as an artist and as an advocate for disability rights. But even heroes sometimes need help.

–Dan Bolles, Keilani's fiancé

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Hello,

My name is Keilani Lime and I am crowdfunding to help with costs associated with my ongoing battle with Classical Ehlers-Danlos Syndrome or cEDS. I also have many gynecological health issues tied to cEDS, including Adeomyosis. In a blog I recently guest wrote on, I shared “I think of my health issues as a giant iceberg blocking me from my true self, my life as I want to live it.”

Since 2016, I have had more than 50 procedures and minor and major surgeries. This includes dozens of nerve blocks, injections, colonoscopies, endoscopies, laparoscopies, sinus surgeries, neurectomies, nerve transpositions, an appendectomy, bilateral total hip replacements, brain surgery, and spinal cord surgery.

cEDS is no joke.

On top of the pain and loss of quality of life from all of the above, we (myself, my fiancé, and my team of doctors) have all agreed carrying a pregnancy (much less going through labor or a cesarean) would be too much on my body and too risky for me and baby. I am devastated, but I know it is what I need to do. I am scheduled to go in April 26th, 2023.

As I write this, I am also waiting for the date I will have a revision on my right hip prosthesis, which is not sitting in my pelvis correctly. With all of these procedures and surgeries, I have lost nearly all of my muscle mass. Being physically strong was something I took for granted. I can no longer walk without an assistive device, sometimes a cane but usually a walker, and sometimes I use a wheelchair.

Coming from a low-income family with financial hardships, I vowed to always stay financially independent. As you might imagine, over the years I have built immense medical debt, and I feel profound sadness when I share that I have had to resort to crowdfunding. The GoFundMe will help pay down my medical debt and future healthcare debt… and help me simply stay above water until I can (literally) get back on my feet.

Due to the poor state of my health, I cannot work. A little more than a year ago, I was let go from a job that I absolutely loved while I was still on part-time disability, recovering from brain surgery. I haven’t been able to work since. I continue to paint and do small shows here and there, but not to the extent I would like to.

I have lost so much, and believe it or not I have left out large chapters of my story —probably a dozen other problems/diagnoses. I grieve my former self. I am coming to terms with being a person with a disability. It is the hardest thing I have ever done.

Below is a link to my original GoFundMe Story. Lots have changed since writing that initial introduction to my reasons for resorting to crowdfunding, and unfortunately not for the better. I originally was fundraising to help get over my huge medical debt and pay for an upcoming spinal cord surgery. We all thought I would be on the mend and able to get back to work post that operation…however, things took a wrong turn.

Due to complicated reasons, I cannot go on disability or get Medicaid. I truly feel that once the hysterectomy and hip revision is done and I am healed, I will be able to get back to work. Until then, I must look to you – my friends, family, and the kindness of strangers to help me as I continue to chip away at the iceberg. Please know my thanks for your help, whatever you can do, is endless.

Read the guest blog, Share Your Scars here, and my previous GoFundMe Story here.

With So Much Gratitude,

Keilani