How do I know if I have trimethylaminuria?
Do people make rude comments about your smell? Does the room stink as soon as you enter? Do people cough hold their noses etc. around you? Do they give you dirty looks?
I am a long-time sufferer. I find that its very important to find and talk to others like you. I truly hope that one day there is a cure for this disease. Until then we should all help each other out with tips and support. In my case, here are some tips/things that have helped me come to terms with my disease, I hope it can help some of you:
-Using Talcum powder (this is a MUST in the summer)
-Using unscented moisturizer.
-Drinking lots of water.
- Activated charcoal which I usually get from Amazon.com (I find the Braggs capsules better than the tablets- careful if you are taking prescription meds as these may stop them from working).
- Chlorophyll (from Amazon, I get the pure version called World Organic and only take it when I go out- I find the peppermint version too weak)
-CBD oil drops from Get Tranquil CBD (I get that from GetTranquil.com I get original flavour- I get this because I find that my smell is worse when I am anxious and tense. These drops help me relax.) - A Girl’s Guide to Managing TMAU: My Personal Experiences, Diet and Solutions Kindle Edition by Katie Turner (from Amazon, this book is a godsend, it says it’s a girl’s guide, but I found that the tips can be used by anyone. It has lots of helpful tips/ideas on how to manage the disease)
-Ashley Smells Like Garbage!: First book in the series: A Child Like Me Kamau Mahakoe (from Amazon—This could be good if you have a child that suffers from TMAU)
-The Boy Who Smells Like Fish (2013)- Movie about a Boy who is living with TMAU.
We truly need to raise more awareness about this horrible disease so don’t be afraid to open up to your loved ones also if anyone else has any tips which could help, please share them.