- Anosmia
- Interviews
Katie's interview
How did all start?
I was born with CA (congenital anosmia), it wasn't acquired so I've never had the opportunity to smell
Do you already have a diagnosis? How long did it take you to get it?
People who have CA rather than Acquired Anosmia are hardly ever diagnosed. Majority of doctors (believe it or not) are oblivious to CA. Some doctors say they've never heard of it, other CA people have said their doctor either doesn't believe them or disregards them as theres no cure or long term fix for the problem.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Those with CA are usually ignored, forgotten about and most members of the public are unaware it even exists as opposed to acquired anosmia.
What has been the most useful thing for you so far?
Nothing. Nothing can help a person with congenital anosmia. There's no short or long term cure.
What have been your biggest difficulties?
Born with the inability to smell is a lesser "disability". I wouldn't even call it a disability compared to those born with the inability to see/hear. We manage as we've never smelled anything before so were not missing out like an acquired anosmiac would be. We cannot smell horrible things which is a plus- vomit, poo, wee. But the more dangerous side is we cannot smell smoke, gas, off food/drinks which is potentially life threatening in some cases.
How has your social and family environment reacted? Have your social or family relationships changed?
When you tell someone you have anosmia the first question is always, "what's that?" it's not well known so a lot of us find ourselves repeating ourselves to different people. It is hereditary too. People are either quite intrigued, aren't interested and some genuienly don't believe you. Which isn't right, you wouldn't question a deaf person if they couldn't hear.
What things have you stopped doing?
Considering it's a defect from birth it doesn't change you or what you'd usually do. You can't miss out on what you've never experienced.
What do you think about the future?
I hope there's a cure, even a short term one. Or maybe if doctors could look into it more and see it's a real thing! Most CA sufferers would rather not have the chance to smell due to the overwhelming-ness that'd come with smelling again. Imagine being born blind, 23 years later someone gives you the chance to see, some blind people would not take the chance as it'd be too much for them.
So far, which years have been the best years in your life? What have you done during them?
Nothing that is related to anosmia!
What would you like to do if you didn’t have your condition?
Smell something just once, anything, even if it is something horrible, it'd be amazing to experience that
If you had to describe your life in a sentence, what would it be?
Hectic and hard
Finally, what advice would you give to a person in a similar situation?
Your condition IS real. Don't let doctors or other people shun you for it.
