Can you imagine spending your life being teased and ostracized because of the way you smell? What if no matter how much deodorant you used or how many baths you took you smelled like rotted fish? Well this is exactly what happens to people who have the rare metabolic disorder called TMAU (Trimethylaminuria).
This disease causes the afflicted person to smell like rotted fish because the body is unable to breakdown trimethylamine. This compound is the cause of the strong odor that is given off in the sweat, urine and breath. The worst part of this illness for most sufferers is the way they are treated by others. Most of these people spend their lives feeling socially inept and isolated. Due to this disease being so difficult to diagnose; the patient spends years trying to understand why they smell the way they do. Most doctors are unfamiliar with this disease and either doesn’t take patients seriously when they come in complaining of a strong odor. Some doctors try to help the patients, but often misdiagnosis are made.
TMAU mostly affects women and doctors believe that the hormones estrogen and progesterone are responsible for this disease. Many women get counseling and work hard to manage their symptoms. Unfortunately there is no known cure for this disease. There are ways however, that the fishy smell can be minimized. Doctors recommend that patients stay away from foods that contain sulfur, lecithin, nitrogen, and carnitine. They may take low doses of antibiotics which reduces the gut in the bacteria. They must also take many showers.
Interestingly enough there has been one promising study that may offer some relief for the sufferers of this disease. The study used activated charcoal or copper chlorophyllin to metabolize the TMA. The study was very successful with 85 percent of the patients having complete remission of the odor. This has given many sufferers some hope.
No one should have to spend their lives fearing rejection from others because of a disease that they cannot control. The ridicule for most patients is worst than the disorder itself. Doctors need to listen to their patients and make sure they get a complete understanding of their symptoms. Because many doctors are so busy, they don’t take the time to investigate the information that is given to them. This misstep in the medical profession has caused more pain and suffering to their patients.
Recently on Mystery Diagnosis, there was a young woman who suffered from TMAU. She spent thirty years of her life fighting depression and low self-esteem because of the way others treated her. She went to various doctors throughout the years who misdiagnosed her and she was left to figure it out on her own. She went to nursing school and because of her education was able to find out what she was suffering from. She could have had a better quality of life if the doctors had done their homework.
TMAU is a disease that is a socially alienating. Although this is a rare disease, for those suffering from it life becomes almost unbearable. Through recent medical advances; there is hope. This rotten fish smell that plagues the sufferers of this disease may now have a nemesis in activated charcoal. Maybe this can help the patients live the life they deserve. Maybe they can just be normal.