A story of hope and healing.
“I'm Andi*, an ambassador for a very rare condition called Trimethylaminuria (TMAU or Fish Odour Syndrome). A condition very often mistaken for bad hygiene practices, as the bodies of patients with this condition fail to metabolize a certain compound called TMA. This compound is produced in the gut, and it is the compound that gives fish, their fish odour. In humans, it is metabolized into TMAO which is an odourless compound, but the bodies of patients of TMAU, cannot metabolize TMA. Thus, TMA is released by their bodies through sweat, urine, and saliva.
Thus, patients have a foul fish odour. Many patients tend to completely withdraw from social life, due to reactions they get from the public, and others choose to work from home and self-isolation. As you can imagine- isolating during the pandemic wasn’t so different for us like it was for the rest of the world.
My journey began in 2016 when I started noticing symptoms of my condition, however, due to the scarcity of TMAU testing centres in South Africa and the cost implications associated with getting a test done I waited a long time before my suspicions were confirmed. I was eventually diagnosed with TMAU in 2019.
My condition has no cure and can only be treated by completely removing certain foods from your diet and taking supplements, however, to figure out the winning combination that works for your own body is completely trial and error and not one size fits all so you can imagine it’s a frustrating and time-consuming process.
In the early stages of my journey with this condition I would self-isolate because I was so self-conscious, and people can be cruel and oblivious to the battles you’re fighting. My condition took a toll on my mental well-being, and I ended up in a mental institution. I’m grateful for this as who knows where I would be had I not received the help and support I so desperately wanted.
Through many counselling sessions and finding the right diet and supplements, I've been able to turn the tide. I no longer self-isolate, I'm working part-time and have since managed to complete my BCom degree at the University of Cape Town- achievements I never thought possible. In hindsight my condition has strengthened me and taught me so much. I’m a better person because of TMAU.
I've learned to be more patient and understanding of others who may be going through struggles that are not visible on the surface. It’s always important to take a step back and acknowledge that you only understand a very small portion of what someone is going through so always be kind.
In my role as an ambassador for TMAU, I am committed to raising awareness about this condition, and educating others about what it's really like to live with TMAU. I want to help break down the stigma associated with this condition and help others who may be struggling with the same challenges that I once faced.
Through my own experiences, I have gained a greater appreciation for the value of community, and the importance of empathy and understanding. I hope that by speaking out about TMAU, I can help others to feel less alone and inspire greater compassion and acceptance for those who may be dealing with invisible illnesses.”
*Names have been changed for the privacy of our Warrior.
Rare Diseases South Africa is here to fight the battle with you, it’s a long road but the light at the end of the tunnel is brighter if you’re walking alongside your tribe. For information on the counselling services we offer please visit https://www.rarediseases.co.za/counsellingsignup
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