Imagine suffering from a persistent, debilitating body odor that no amount of bathing, deodorant, or lifestyle change can fix, and then being told by doctor after doctor that the smell doesn’t exist. For millions of people living with undiagnosed rare disorders, this is not a hypothetical scenario. It is life.
Carry Wilson’s memoir, Shattered, is a searingly honest account of her seven-year journey from the first appearance of a mysterious body odor in 1996 to finally receiving a diagnosis of Trimethylaminuria (TMAU), also known as Fish Odor Syndrome, in 2003. Her story is essential reading for patients, caregivers, and medical professionals alike.
What Is Trimethylaminuria (TMAU)?
TMAU is a rare metabolic disorder in which the body is unable to break down trimethylamine (TMA), a compound produced when certain foods, particularly those high in choline, are digested. Instead of being converted into an odorless form, TMA accumulates and is released through sweat, urine, and breath, producing a strong fishy or foul odor.
Because TMAU is so rare and so poorly understood, patients frequently go years, sometimes decades, without a correct diagnosis. Many are told the odor is psychological, dismissed by physicians, or treated for unrelated conditions. Carry Wilson’s story illustrates exactly this nightmare.
The Symptoms That Were Ignored
In 1996, Carry noticed an unexplained musky odor emanating from her body. Over the following months, the odor intensified. People around her began making comments, on the bus, at work, at social gatherings. The smell was variously described as fish, garbage, and feces by those around her.
“Before we left the beach, I took another shower and put on some baby powder, deodorant, and clean clothes.” Yet the smell persisted, a hallmark sign of a metabolic, not hygienic, origin.
She visited multiple physicians. All of them either said they couldn’t detect an odor or attributed it to vaginal infections, bacterial imbalances, or psychological delusion. She was prescribed antibiotics, antifungals, and psychiatric medications, none of which addressed the real issue.
The Diagnostic Odyssey: A Systemic Failure
Carry’s journey involved over a dozen physicians across two cities, Chicago and New Orleans. These included primary care doctors, gynecologists, dermatologists, and psychiatrists. The responses she received reveal deep systemic failures in rare disease diagnosis:
- Physicians dismissed her symptoms because they personally couldn’t detect an odor during brief office visits.
- She was twice admitted to a psychiatric ward and encouraged to accept a diagnosis of delusion disorder.
- Multiple doctors offered to prescribe antipsychotic medication for a physical, metabolic condition.
- No physician she saw proactively researched or tested for rare metabolic disorders.
This pattern, patient reporting real symptoms, physician dismissing them, is tragically common among TMAU sufferers and those with other rare disorders. Research consistently shows that patients with rare diseases wait an average of 4–7 years for a correct diagnosis. Carry waited seven.
How TMAU Is Diagnosed
TMAU is diagnosed through a urine test that measures the ratio of trimethylamine to its oxidized form. The test requires the patient to consume a choline-rich meal prior to urine collection, as this maximizes TMA production and makes elevated levels detectable. Carry eventually connected with Dr. George Preti of the Monell Chemical Senses Center, a pioneering researcher in TMAU, who sent her a self-administered test kit.
Her results came back strongly positive. After seven years, she finally had proof: she had TMAU, and she was not delusional.
Managing TMAU: What Patients Should Know
There is currently no cure for TMAU, but the condition can be managed through a combination of dietary changes and supplements:
- Adopt a low-choline diet: Avoid eggs, liver, certain fish (especially saltwater fish), legumes, and red meat, all high in choline.
- Take chlorophyllin (Derifil) supplements: Chlorophyllin can help reduce TMA levels, though responses vary.
- Use riboflavin (Vitamin B2): Some patients report improvement with B2 supplementation.
- Maintain regular exercise: Physical activity supports metabolic processing.
- Use slightly acidic soaps and lotions: These can reduce surface TMA on the skin.
- Track triggers: Menstruation, stress, and heat can intensify TMAU symptoms.
Carry notes in the book that Derifil worsened her own odor, a reminder that responses to treatment are individual and should be monitored carefully.
Why Shattered Matters for the Medical Community
Carry Wilson’s memoir is not merely a personal story, it is a documented case study in the failures of the medical system to serve patients with rare disorders. Her book calls on physicians to listen more carefully, investigate more thoroughly, and resist the temptation to attribute unexplained symptoms to mental illness.
For anyone who has been dismissed, misdiagnosed, or told their symptoms are “all in their head,” Shattered offers both solidarity and a road map. And for the medical community, it is a challenge: do better.