Congenital Anosmia | The Official Diagnosis | Dia Kline

[@krotonastore]

I was so excited to hear you! I do not have the ability to smell, I have never felt a smell, now that I am 32 years old, with two children and the tremendous impotence of having to adapt to a whole world every day of my life and that the medical authorities do not accept that it is a sensory disability. .. I have only been told that I am lucky not to have a sense of smell! It is a horror! I was very encouraged to see and hear you, it made me want to have a blog or account to tell my day to day and visits to the doctor to see if here in Chile my country can certify congenital anosmia as a permanent sensory disability. I send you lots of hugs from Latin America! and Thank you for uploading these experiences in videos.

[@diakline]

Thank you so much for reaching out! I know exactly how wonderful it feels to find your community. Welcome! I'm glad to share my experience in hopes of your sharing yours. Check out Fifth Sense UK for more support and education. Also, listen to The Smell Podcast for stories from other anosmics. You'll find great comfort in hearing your life reflected in their stories. Big hugs back to you!

[@csworth]

I was diagnosed at the age of 7 with congenital anosmia by a doctor having me close my eyes and putting a spoon of peanut butter under my nose. This was 1971 and probably cost my parents just a few dollars. 51 years later, his diagnosis is still 100% correct.

[@diakline]

That’s wonderful and I’m jealous. Did he notate it in your medical file? I’m glad to have my official diagnosis and official document.

[@csworth]

@@diakline He did not. I told my GP years later and they put it on my chart but never tested me.

[@greatsoldier]

I didnt realize penury butter had a smell, its just brown and it sit there

[@cardinalRG]

@csworth --I’ve never been diagnosed. My congenital anosmia became evident when I was a small child, but in a family that had an asthmatic, a severe allergy sufferer, a gunshot victim, and facial trauma thanks to a kicking burro, my anosmia just didn’t seem to be much of a problem on the scale of things. By the time I got older and started mentioning it to doctors, I’d already made enough adjustments so that it was not a significant hindrance. No doctor ever recommended testing it, nor suggested any remedy, and only one or two even made an official note of it. I’m *not* minimizing the experience of anyone else who has congenital anosmia, but just illustrating that such experiences vary. By the way, I love peanut butter. An ex-neighbor was a lawyer and an alcoholic, and he'd stash a bottle of the hard stuff in one drawer of his desk, and a jar of peanut butter in another. He'd swallow of big spoonful of peanut butter right before meeting a client, to mask the scent of the alcohol. With a client like you or me, he could have saved the trouble, eh?

[@tammyt3434]

Okay, you're hilarious but I'm tearing up. I am so damned glad I found you.

[@diakline]

Thank you Tammy!! I’m glad I made you laugh 😆 You made my day!

[@mikegroocock6279]

I have no memory of ever having a sense of smell, I'm aged 59 and I've never missed it once. How could I miss what ''ve no experience of, great vid bye the way. I never knew having no smell has a name.

[@diakline]

Thank you for sharing your story. I’m happy to let you in on the name of your condition. Better late than never!

[@dough.1355]

Okay, I found my people. I'm 57 years old and have never been able to smell! My family is amazed and test me all the time. Can you smell this? Can you smell that? HaHa that's amazing that you can't. Well, now I want an official diagnosis to find out if it's all in my head! I've always wondered why I can't smell farts and lemons and all that stuff. Thanks for the fun video.

[@diakline]

Welcome!!! My biggest revelation, other than knowing the name congenital anosmia, was finding out about the trigeminal nerve. Everything I thought might have been smell, was actually just me feeling the nerve.

[@dough.1355]

@@diakline I've always wondered if I can smell but just don't recognize what a smell is if that makes sense. I'll be contacting an ENT today! I had numerous sinus infections as a child and sinus surgery in my teens. But, I don't EVER remember being able to sense smells. I would love to find out definitively what's the cause.

[@diakline]

@@dough.1355​​⁠Make sure you know what to ask for and push for what you need. Your ENT will more than likely pushback. Protocol is an UPSIT scratch and sniff test, steroids (I suggest saying no), a nasal scope (not fun), an MRI (a CAT scan would come later if needed) and an official written diagnosis in your medical chart.

[@dough.1355]

@@diakline Thank you for the information. I will report back later on of my outcome.

[@ronben-joseph3003]

You're so great Dia! Excellent video! :)

[@diakline]

Thank you Ron! I’m trying to be half as good as you!

[@ShivangiSaysSup]

Love this ❤️

[@diakline]

Thank you Shivangi! I’m so glad you like it 🤗

[@donelliot7650]

Sent here by Charlie on TikTok. I’m 67 years without osmia and my brother is as well. From interacting with Charlie and another CA I’ve come to recognize this really is a disability. I’ve spent some time on the FB groups, but mostly just live with it and still have to remind my friends of 40 years that, no, I can’t smell that... I’ve had a few MRIs over the years for various things so I consider myself an expert at going into the zone until the banging stops. So that I can handle, but the probe, I don’t think so. Just got s as COVID test and that was bad enough. So, is there any more data about CA being caused specifically by lack of olfactory bulbs? I would presume not.... Thanks for the video. I’ll check out your other ones and I’m subscribed.

[@diakline]

I’m so glad Charlie referred me to you. Welcome! It’s always a pleasure to meet another CA. Since your brother is also a CA, you may have a generic component in your family. You should contact the Monell Center for possible inclusion in their research on mapping the CA gene. Fifth Sense UK will be a fantastic resource for you. You should definitely check them out as well. I hope you enjoy my other videos! Thank you for following and commentating! 🤗

[@brandybarnett9953]

I wish I could get an mri of my brain. I have congenital anosmia as well as other issues that I would love to see if were caused by structural issues. Insurance says no because it won’t lead to treatment

[@diakline]

I would love to see more CA’s get an official diagnosis! Maybe you should come up with some creative reasons why your doctor needs to do tests. Or find another ENT that is interested in diagnosing you. If they don’t know the reason, you don’t t know it can’t be fixed!!

[@greatsoldier]

I also have been born with congenital anosmia, my name is Austin Kline and I am interested to learn if we are related at all.

[@diakline]

That's too funny! I wonder if we are. Then we could say it's genetic!

[@greatsoldier]

@@diakline if I understand correctly you live in Colorado, I live in Pennsylvania, do you know if you have relatives there, and do you know if you're related to the Kellers?