Trapped in Her Body: Life with Ehlers-Danlos Syndrome
Carrie lives with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that makes joints hypermobile and prone to dislocation. Growing up in Portland, her condition was particularly severe compared to other family members with the same diagnosis.
“I had periods of time where I was in a wheelchair, had to use walking aids. Pretty much every joint in my body has dislocated, including parts of my spine,” Carrie explains. “By the time I was a teenager, I pretty much knew how to put every part back together.”
Her condition was so severe that she was evaluated for surgery multiple times but was deemed a poor candidate. Doctors told her she would never walk again. The medical establishment offered little beyond pain management and palliative care.
The Perfect Storm: When Pregnancy Made Everything Worse
Pregnancy exacerbated Carrie’s condition dramatically. The hormone relaxin, which helps prepare the body for childbirth, made her already loose joints even more unstable.
“The hormones that your body goes through during pregnancy exacerbated my Ehlers-Danlos more than anything I could have imagined,” she recalls. “For two of my pregnancies, I was on medical bed rest for the latter half of the entire pregnancy.”
Alongside her EDS, Carrie developed POTS (Postural Orthostatic Tachycardia Syndrome), causing her to experience dizziness, fainting spells, and what she describes as “air hunger” upon standing. She also suffered from MCAS (Mast Cell Activation Syndrome), triggering numerous allergic-type reactions.
At her lowest point, Carrie was confined to a single room in her house, unable to stand without risking fainting, and taking multiple pain medications daily.
The Turning Point: Discovery in an Online Support Group
In 2017, while participating in an online support group for people with POTS, Carrie noticed several members mentioning how a ketogenic diet had dramatically improved their symptoms.
“I thought, ‘Oh god, another fad diet,'” Carrie admits. “But from talking to this person, it was an open chat, and there were a lot of other people who chimed in saying lowering carbohydrates really helped with their symptoms.”
Having tried everything from veganism to raw food diets with no success, Carrie decided to research the ketogenic approach. With her background in clinical research and nutrition, she dove deep into the available data.
The Transformation: “It Was Amazing”
The results came quickly and were nothing short of transformative.
“Within a week, I was noticing just incredible changes,” Carrie reports. “Within a month, I was not only not having the fainting spells or vision changes upon standing, I all of a sudden started to have energy.”
Her persistent brain fog lifted. Her chronic inflammation markers, which had always been elevated in blood tests, normalized for the first time in her life. At 210 pounds, Carrie began losing weight steadily while gaining the energy to care for her newborn and toddler.
Most surprisingly, her joints began feeling better.
“It felt like the difference of having your joints filled with sand to having them all of a sudden lubricated, and I could just move with such ease,” she says. “It was really nothing short of miraculous.”
Living a Full Life: From Bedridden to Homesteader
Today, at 41, Carrie runs a homestead in Nicaragua, where she raises chickens, maintains gardens, homeschools three children, and operates two businesses with her partner.
She’s reduced her medication intake dramatically. “I went from taking pain meds three times a day to taking one-third of that dose once a day. I maintained that for a few years and then completely stopped taking any kind of pain medication.”
Though her genetic condition hasn’t disappeared, the debilitating symptoms have largely subsided. In the past three years, she’s had only one serious dislocation, compared to the frequent dislocations she experienced before changing her diet.
“I haven’t had a serious dislocation in the last three years, which is incredible,” she says. “And I recover quicker, I’ve noticed. I’ve had the opposite experience of many with Ehlers-Danlos who say everything gets worse as you age. I’ve only started to bounce back quicker and quicker.”
Whenever Carrie strays from her low-carb approach, especially during holidays, her symptoms quickly return—a powerful reminder of how profoundly diet affects her condition.
“I tend to cycle back to it pretty quickly because it’s just what makes me feel better,” she explains. “There’s only so long I can go with the grittiness of joint inflammation, knowing that I can fix that with a simple diet change.”
