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Tuesday, November 17, 2009

Trimethylaminuria article in 'The exceptional parent' 2003 by Rick Rader

This is a 2003 article about attitudes towards trimethylaminuria by Rick Rader, a 'medical futurist', logically predicting the future for people with neurodevelopmental problems. He was invited to the 2nd Trimethylaminuria workshop in 2002 to speak about the Psychosocial Aspects of The Trimethylaminuria Experience.

His initial attitude towards TMAU, when compared to other health disorders, is probably typical, but as he meets sufferers he realises what a devastating mental affect the condition has on the sufferer. Indeed, it should be regarded as a disability.

...In many ways, trimethylaminuria is a model of the entire negative discordance directed towards people who seem different to others. It's the template disorder for all conditions that cause people to disengage from social affiliation. While social affiliation is not unique to our species it is indeed the center of our existence, our cement and our prevailing universality.

Trimethylaminuria seems to be a disorder that most certainly could have had its roots in classic mythology. These spellbinding stories are used to explain our random and threatening universe, natural phenomena, character flaws and our dark side. There must be a tale in Norse mythology that explains how this curse came to be. It seems too significant an entity to blame on the flavin-containing monooxygenase 3 enzyme (FMO3). Surely Odin could have grown tired of dealing with the wolf Fenrir, the monstrous offspring of the fire god Loki, and burdened him with the eternal odor of Jormungand, the giant sea serpent. The stench of a rotting sea serpent would probably get any Norse god's attention. I like that explanation much better than that of some enzyme gone amok...

... When eight-year-olds with trimethylaminuria confide in you that they wish they had cancer or needed to use wheelchairs or had third-degree burns, so they wouldn't have to explain the unexplainable to their classmates, you get a clear focus on the depth of their despair. When their embarrassment and social phobias confine them to closets and shut them off from school, sports, parties, friends and the richness of life, then you can start to appreciate that disabilities come in all forms. Extrapolating from the definition of art, anything that disables is disabling...

Full article
Rick Rader's 2003 trimethylaminuira article : On being downwind of disrupted lives

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