Voices Across America

The Odor That Almost Killed Me (TW)


State: Illinois
Congressional District: IL07


Rare Disease

Issues and Challenges

Cathy has encountered: Access to Expert Providers, Rare / Underserved Disease, Discrimination (nonmedical), Social Security Disability

My Story

(TW: discussion of suicide)

The Foul Body Odor that Almost Killed Me is a candid and deeply personal account of one woman’s struggle to obtain proper medical care for a rare and incurable condition called Trimethylaminuria.

Plagued by a terrible odor that not only proved to be embarrassing but also made it difficult for her to hold a job and provide for herself and her children, Carry Wilson sought help from a number of physicians in various fields. Despite the indications of her own research, medical professionals repeatedly dismissed her concerns and assumed she suffered from a psychiatric disorder rather than a medical condition. Desperate, isolated, and depressed, she was hospitalized several times with suicidal ideations, a history that only seemed to make it more difficult to secure quality medical attention.

The Foul Body Odor that almost Killed Me offers insight to issues within the medical system and also seeks to assure readers facing similar challenges that they are not alone. Ms. Wilson’s story is both troublesome and inspiring as she recounts the events that transpired over the course of seven years while she sought the means to manage her condition.

Of course, having a foul body odor cannot kill you, but coupled with doctor after doctor not knowing why you have this foul body odor, depression may arise, along with thoughts of suicide.

My Motivation and Inspiration

What makes my story, my book, any different from any other person suffering from body odor? 1996 is the difference. In 1996, there was little to no information on the condition of the invisible monster that is; Trimethylaminuria-TMAU. There was no YouTube; just me running around, smelling horrible, and trying to explain to the doctors that there was a book, The Human Body Odor, that could explain to them how it is possible for me to have a foul odor coming from my body that they cannot smell. My book could explain why 20-Twenty years after I and thousands of other body odor sufferers have dealt with body odor, the medical field is still failing to diagnose these conditions. There are websites and YouTube videos of people suffering, going back and forth to doctors and doctors telling them, THERE IS NO ODOR, IN 2023!! My book can educate the medical field on the suffering, and medical mistakes made by medical professionals. My book is not just my story; it's his story, her story, and our story. Please help me, help a community of silent suffers

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