It Does Matter

I was born with congenital anosmia, though I wasn’t diagnosed until four years ago. I realized early on that I couldn’t smell like other people, but my nerves could still detect strong chemicals, so for a long time I thought I just had a very bad sense of smell. Then an ENT explained that I wasn’t actually smelling anything — my trigeminal nerve was just picking up the chemicals in certain things. I scored 0 out of 40 on the scratch-and-sniff test.

The doctor who diagnosed me said I was born without a sense of smell and that there was nothing to be done, because there was no treatment or cure — “because it doesn’t matter.” I told him I would do the research myself and find one, because it does matter. It has a real impact on rare people like us.

I stayed partially true to that vow. I did so much research on congenital anosmia and what causes it. I even had my whole genome sequenced, and through that analysis I traced my anosmia to a mutation in the CHD7 gene. Since then I’ve taught a lot of people about congenital anosmia, and I’d love to meet others like me. Anosmia Awareness Day matters to me because it honors people like us — and reminds us we’re not alone.

— Nadia, Wisconsin