Truly spoke to Alyssa, a Florida teenager who has been living with an uncommon health disorder for years that causes her to smell like fish.
“My mom knew when I was little that something was wrong, but they never found a name for it until I was about 6,” Alyssa recalls.
“She was always sweating really bad. I couldn’t put clothes on her because she’d just sweat through them,” Alyssa’s mom, Kacee, explains. She says that it took extensive testing by doctors for them to finally put a name to her daughter’s rare disorder.
Kacee says that trimethylaminuria is a rare disorder that prevents a protein called trimethylamine, which is found in many foods, from breaking down in your digestive system. The buildup of trimethylamine in one’s system then results in a smell that resembles that of rotting fish.
Alyssa and Kacee both note how difficult it’s been for Alyssa in school, because there’s always been some form of bullying or name calling from her classmates due to her disorder, from the time she was a young girl.
Currently, there is no real treatment in place for trimethylaminuria, but there have been some major adjustments for both Alyssa and her family in terms of what kinds of food they consume.
“All we can do is make sure she’s not eating a lot of green leafy vegetables,” Kacee says of her family’s approach to helping Alyssa live with trimethylaminuria. “We have completely cut fish out of our diet. There’s no milk, it’s all almond milk.”
In order to help build up her self-confidence again, Alyssa has found that playing on a softball team with a group of girls who are focused on the sport has really helped her, especially when trying to get through those tougher days.
To find out Alyssa’s hopes and dreams for her future, check out the video.
