After more than two years of agonizing frustration from medical doctors and specialists, Gold Beach resident Kylie Baines Philpott has finally found a little relief.
Philpott, 27, recently returned from a three-week visit to the Mayo Clinic in Arizona where she met with doctors and underwent tests.
“I’m in really good hands there. I love it. I’ve never been treated so well by doctors in my life,” she said. “It was just really comforting to not feel so alone, and for everyone of them to say that this is really bad. You cannot make this happen. It’s just life. It’s not genetic.”
Philpott has multiple system atrophy, a rare neurological disorder that impairs the body’s involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion.
She suffers from both high and low blood pressure, and memory loss (she can’t remember trips to the grocery store or who she spoke with the previous day on the phone). Other symptoms include loss of peripheral vision, enlarged pupils, a bladder and bowels that have shut down, pelvic floor cramping that she says is more painful than being in labor, fainting and blackouts, legs and feet that turn purple because her blood doesn’t circulate properly, ear pain and an extremely weak heart.
Her condition is so rare that even with countless surgeries, doctors have yet to determine exactly what Philpott suffers from.
Doctors know that Philpott has some sort of autonomic condition, but are unable to pinpoint the disease because she has so many symptoms, she said. Doctors are at a loss because they don’t know where the extreme memory loss originates and why her blood pooling is so severe compared to other autonomic patients, she added.
While in Arizona, she saw 20 different doctors, had a hysterectomy, a colonoscopy and a variety of other procedures.
On Aug. 10, she will leave to drive to Arizona again for a two-week visit to continue where she left off.
Philpott will meet with autonomic specialist Dr. Brent Goodman, a top urologist team, a neurologist for a four-hour brain memory cognition study, a gynecologist and a hematologist to hopefully learn exactly what she has and how to better treat her symptoms. There is no cure.
“That’s all for right now,” Philpott said. “The schedule changes every day. I went from four days to three weeks (last time). Your schedule picks up a lot when you’re there. It changes every day.
“I just pray that there is teatment because I don’t krnow yet.”
To help pay for the travel costs and medical bills, Philpott has organized an ongoing raffle that ends Sept. 1.
The 29 raffle items, valued at more than $2,200, include a $30 gift card to the Whaleshead Beach Resort restaurant, Prehistoric Gardens family passes, two free boat passes from Jerry’s Rogue Jets, a spa day with Wendy Mickelson of Country Cuttin and a one-night stay at Tu Tu’ Tun Lodge.
All of the items are priced at either $5 or $10.
To view a full list of the raffle, and for more information on Philpott, please visit www.masjourney.com.