The story of Crissan
Hi, my name is Crissan and I want to raise awareness for a metabolic condition called Trimethylaminuria.
It all started after my 18th birthday. I developed Irritable bowel Syndrome (IBS) after two rounds of antibiotics and food poisoning. A year after the IBS symptoms, I would smell strange odors around me. Family and friends told me that they couldn’t smelled anything. However sometimes I would get comments from strangers in the supermarket, classmates and people on the street. “What is that smell ? or you smell like pasta sauce or you smell like smoke”. It was very confusing and stressful. Doctors always laughed a little when I told them my story and they said “it’s all in your head”, they thought I was crazy ! I was even referred to a psychologist and a psychiatrist, The odor symptoms kept me very busy. I did everything to smell nice, showered 3-5 times a day, washed my hair, brushed my teeth and always put on clean clothes. I also made sure that my house was squeaky clean. I searched the Internet day and night for solutions, a cure, the magic pill that would make me smell nice again. I spent tons of money on supplements, foods, cosmetics, perfumes and shower gels.Meanwhile I started isolating myself, I avoided social situations, I felt so dirty and ashamed. The social anxiety was gripping, I did not dare to go out. Little things like going to the supermarket, taking a walk and exercising became a burden to me. Sometimes I stayed inside the house for days.
In 2011 I finally found more clarity, an international peergroup for people with body odor condition called Trimethylaminuria. (TMAU). TMAU is a rare metabolic disorder, in which the liver and gut is not able to metabolize proteins, sulfur, nitrogen and trimethylamine. As a result a fish odor, sulfur odor or other odors are produced. Unfortunately, the testing for TMAU is very expensive and because it is so rare, a lot of hospital don’t offer testing.
In 2015 I finally managed to convince my doctor to refer me for a test. In the Netherlands there is only one hospital specialized in this condition. After the urine and blood TMAU test, I had to wait a year before I finally got the results ! A genetic mutation was found on the FMO3 gene, which is the main gene for metabolizing trimethylamine, nitrogen and certain sulfurs . It has taken me 13 years, 13 years of shame, sorrow, pain and a lot misunderstanding from doctors, family, friends and especially strangers to finally find an answer for the weird symptoms I had been having.. The support from peers and the diagnosis has been a great blessing. I am not ashamed anymore, I realized that I’m more than this condition. Over the years I have found a diet and products that help me, suppress the symptoms.
For me it is very important to raise awareness about this condition, because it is so rare and It has such a big impact on every area of the patients lives. It is a chronic, but not life-threatening disease. but there are many patients who feel so ashamed and suffer so much, that they commit suicide. Many people are bullied and live in isolation. It is a disease with serious consequences. I hope that research will shed light on the causes of this gripping disease.
Connect with other people living with Trimethylaminuria – RareConnect.org