Katie Kenoe is active by nature. As a 39-year-old wife, mother to three, and working nurse, there was hardly a dull moment in her day.
In 2024, that all changed. A sinus infection left her with lingering nerve pain in her face.
“At the same time, I was losing my ability to walk properly so I would find myself walking my dog, my kids to school,and I preferred biking because it was less energy,” Katie explained. “And we couldn’t figure out why.”
Katie endured endless appointments and spent a lot of time advocating for herself. She knew something was not right inside her body.
Finally, she was diagnosed with Ehlers-Danlos Syndrome, or EDS. It’s a rare, connective tissue disorder that has her bed-ridden for 22 hours a day.
If she’s upright, she feels the symptoms of EDS. That includes tremors, tics, and severe pressure in her head. On a good day, Katie says she may be able to be upright for closer to four hours, but it’s not often.
“Every time I was upright, I would get symptoms,” Katie said. “And when I would be flat, the symptoms would improve.”
More research is needed for EDS. The genetic disorder impacts everyone differently.
In hindsight, Katie said there were signs, but she always pushed through.
“It’s almost like the game of Jenga, where one false move can collapse the whole system and that’s what happened in my case,” she said.
Katie has a strong community. Her husband works from home to help her, and her dog, Ren, is often right by her side. She said her church has kept a meal train going for her family for over a year and a half.
After facing obstacle after obstacle, and trying treatments that haven’t worked, Katie and her husband turned their attention to a highly specialized surgery that’s done in Barcelona, Spain. Katie was accepted for the procedure and will head overseas for surgery at the end of the month.
This spinal surgery may be her last chance at normalcy. A chance, she said, to return to the life she loves.
“The results are varied from being able to sit up a little longer to patients who are walking five to six miles again,” Katie said. “Obviously we’re going to pray and hope that’s me, and I have no reason to believe that won’t be.”
Insurance has denied much of her treatment, including an air ambulance to Spain so she is flying commercial, lying down. They are paying out of pocket for her surgery, estimated at over $139,000.
To learn more about Katie’s story, you can visit her www.gofundme.com/f/help-save-katies-life-urgent-neurosurgery-in-spain.
Hence then, the article about mount prospect woman seeks treatment in spain for rare disorder was published today ( ) and is available on NBC Chicago ( Middle East ) The editorial team at PressBee has edited and verified it, and it may have been modified, fully republished, or quoted. You can read and follow the updates of this news or article from its original source.
Read More Details
Finally We wish PressBee provided you with enough information of ( Mount Prospect woman seeks treatment in Spain for rare disorder )
Also on site :