Ketogenic diet for Ehlers-Danlos Syndrome (EDS)

Mar 19, 2021

Harvard undergraduate student Elaine (Elly) Katz interviewed Dom for her Genetics and Genomics class project. Dom was so inspired by Elly that he thought it would be great to highlight this remarkable story in the KetoNutrition Blog on the ketogenic diet. Click HERE to read Elly’s interview entitled “The Key is in the Ketones: Become Keto-Adapted to Prevent or Treat Disease and to Optimize Cognition”.

Elly Katz was diagnosed with a rare heritable connective tissue disorder that lacks a cure, called Ehlers-Danlos Syndrome (EDS). Remarkably, however, she has found relief with a ketogenic diet and exogenous ketone supplements, which was her reason for reaching out. In this post, we want to share a bit of her story, with bits and pieces taken from a personal piece she wrote on her experience living with adversity, followed by how she uses nutritional ketosis to manage her disease. Elly has bravely made herself a walking n=1 experiment, and highlights another emerging potential application of nutritional ketosis and supplemental ketosis.

An introduction to Elly and EDS:

“I am a senior at Harvard concentrating in Integrative Biology, with a primary focus in genetics and its applications. Rather ironically, my body is its own ongoing genetics experiment. I was dealt a rare mutation at birth in a gene called TNXB, which is responsible for organizing collagen throughout the body, and places me in a category of patients with Ehlers-Danlos syndrome (EDS). The collagen protein that fortifies joint capsules, the glue of the body, is malformed in me, rendering me essentially a collage of functioning parts that fail to function in concert. If you see me dancing down Harvard yard, you may gloss over the reality that my life diverges from that of the average college student in far too many ways. My hips dislocate if I sit on solid surfaces, my gastrointestinal tract just barely functions, my shoulder will fall limp if I reach forward or put on a shirt, and my knee caps will emerge latterly if I accidentally cross my legs when sitting. I would consider myself unique in that I stand after taking a three-hour exam to find both knee caps dislocated, my legs numb and locked at an awkward angle. Those are just a few snapshots that serve to illustrate my personal and daily challenges to which the outside world, excluding my dear friends, is blind.”

Elly’s first injury took place at 10 years old when her lower spine fractured out of alignment. Years later, her spine was finally fused with rods and screws that secured her vertebra, until requiring a second fusion a year later. She spent most of her childhood in bed recovering from fractures and surgeries.

“What began with my spine, the body’s pillar of stability and bidirectional feedback, coursed through my limbs rather subtlety, at least initially, and then became me, defining my being through thick and thin. Back surgery gave way to nerve damage in my left leg, which led to Complex Regional Pain Syndrome in my left lower extremity. The world felt like a furnace because my nervous system was on high alert, mistaking a soothing touch for a blow torch. At age 17, I could not walk, nor stand, nor sit, nor lie down. The pain was electric, and my leg acquired a mind of its own, morphing into some abstract and insane work of art that gushed with hues of purple and red. I was hospitalized for months at a rehabilitation center, where I gradually transitioned in my dependency from wheel chair, to walker, to two crutches, to a single crutch, and, finally, to my legs with the aid of antigravity machines and mirror therapy.”

Throughout her teenage years, she experienced several challenges.

“Ovarian tumors, dislocated knee caps and shoulders, torn nerves, and pain seemed to call my name from some black hole in the universe, and I collided, body and spirit, into the invisible walls of illness again and again. I teetered between wellness and illness, and the most micro of movements would send me in an unfortunate direction.”

Because collagen lines the GI tract, she also suffers from abdominal distention, dysmotility, and diastasis recti, in addition to mast cell activation syndrome, all which prevent me from dining out and from digesting many foods.

It wasn’t until she started school at Harvard, after experiencing a series of hip and knee dislocations that left her bedridden yet again, and a meeting with a geneticist that connected the dots of her syndrome.

“Now, I recognize that my diagnosis with Ehlers-Danlos Syndrome, a rare heritable connective tissue disorder that lacks a cure, is a life sentence. Western medicine offers little, if any, therapeutics for my condition.

Elly is now a senior at Harvard studying biology, and describes herself as a “passionate budding scientist entrepreneur” who aims to develop stem cell therapeutics for connective tissue diseases.

“My desire to pursue academics at Harvard on my own terms, unbounded by my physical limitations, motivates me to contemplate my disease in unconventional terms and to craft a blueprint for my body that modern medicine fails to offer. While deeply involved in my coursework, I apply the scientific method and conduct my own research on dietary modifications, nutritional supplements, and exercise regimens that may enable me to optimize my physical and mental engagement in my world.”

How Elly uses a ketogenic diet to manage her disease.

“Roughly a year ago, my self-experimentation encouraged me to sample the ketogenic diet, a nutritional trend that is sweeping through the health world. Before fully immersing myself in this high-fat low-carb dietary approach, I perused research surrounding the topic and, inevitably, came across the groundbreaking work of Dr. Dominic D’Agostino, who is considered the leading scientific authority with regard to ketosis and its emerging applications. In the setting of a chronic disease, like EDS, which causes my inflammatory markers to be elevated above baseline, I am keen on clamping down on inflammation as much as possible. Secondly, because of the high content of quality saturated fat I consume daily, the phospholipid membranes surrounding my cells are able to self-renew and repair. This is incredibly important for me because my form of EDS leads my nerve fibers to be more friable than most. From a scientific vantage point, the above-mentioned reasons were my rationale for becoming keto-adapted roughly a year ago.”

What has changed since implementing a ketogenic diet?

“Adhering to a strict ketogenic approach has radically helped me to manage my chronic pain, has significantly improved my brain power/time to fatigue, and has positively impacted my mood/emotional state. My head feels clearer and my focus is sharper than ever before. While my EDS-associated mutations cause my connective tissue to be lax and predispose me to injuries that cause my trust in my own biology to falter over and again, I refuse to play the victim in my own narrative, to transform my diagnosis into self-loathing. My existence inevitably feels saturated with a sense of loss over a life I once surmised was mine for the taking—from the ability to bare my own children to participating in the mainstream college social scene. It has taken seven years for the reality of my EDS to set in and, occasionally, I still sense that I am acclimating to unfamiliar terrain, adapting psychologically and physically to circumstances that I assume during their unfolding will break me into shards I will never again assimilate into something whole. But, I do. I turn on my inner scientist to marshal as much control as my EDS permits. Just as I was born with my EDS genes, I inherited astonishing genetic stress-response pathways. Despite my fragile internal connections, I am becoming resilient, and even antifragile, by fine-tuning my environment through hormetic habits, like a ketogenic diet, that will enable me to rebuild myself in the wake of whatever my future holds in store. ”

What does your diet typically look like?

“My EDS causes my jaw to be unstable, so currently my diet is liquid-based; I consume a lot of bone broth, olive oil, vegetable powders (from Dr. Cowan’s Garden), collagen and whey protein and avocado. I also take upwards of 150 supplements per day that help me manage pain and inflammation.”

Were these changes immediate?

“It took me about a month to see results, but I found that day by day, my quality of life gradually improved, especially when I added electrolytes, time-restricted eating, and exogenous ketone esters to my regular regimen.”

We want to thank Elly for sharing her story with us. We are deeply inspired by her words, perseverance, and incredible attitude towards life.

Written by: Elly Katz; Edited by: Dominic Dagostino


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