Unicorn Asthma ?

[ejohns]

I follow many of the posts here even as I reside in the U S . I have never heard

the term 'Unicorn Asthma" before. Can someone describe this for me.

thank you ej

[twinkly29]

Hahahaha sorry that's several of us who don't fit the classic or "expected" asthma in terms of symptoms or presentation! So we just made it up for ourselves.

[EmmaF91 Community Ambassador]

😂😂

Sorry. It joking reference to the asthmatics who doesn’t meet the classic presentation of asthma, or the ‘weirdos’ who don’t have allergic or eosinophilic asthma (ie they have the weird phenotype 😉)

It’s an joke... so mystical that only the odd medic believe that they exist

Sometimes people have ‘unicorn traits’ like not typically wheezing etc.

Hope this helps! I’ll see if I can dig up the fun post we had about the different animals of asthma 😅🙈

[EmmaF91 Community Ambassador in reply to EmmaF91]

healthunlocked.com/asthmauk...

The post where it kinda started 🙈😅

[Iceskate in reply to EmmaF91]

You don't always wheeze with bronchial asthma. I have had it for almost 34 years from 15 and at first never wheezed but with bronchial you usually cough.

[twinkly29 in reply to Iceskate]

Good point - and actually wheeze is just one of 4 main symptoms of any kind of asthma that don't all have to present (ever or at once). So absence absence of wheeze is actually normal. Or should be....!

[Iceskate in reply to twinkly29]

It is quite normal. I didn't have a full diagnosis until I had an asthma attack a few years after diagnosis. I still don't always wheeze but it does sound like you have bronchial. Has your GP officially diagnosed asthma or are they messing around?

[twinkly29 in reply to Iceskate]

Not sure if you mean me or eJohns? I definitely have asthma - and pretty much never wheeze. Doctors seem split between those who readily accept that and those who are always surprised that it's possible 🙄. It's literally on the basic asthma symptoms thing as one of the 4 main symptoms but that people don't have to have all of them so you'd think it would be less surprising!!

That said, as MLHM says below, all sorts of things mimic asthma and sometimes "weird asthma" is not actually asthma at all. It's hard when it is and doctors don't accept that - but equally treating non-asthma as asthma isn't right either.

[EmmaF91 Community Ambassador in reply to Iceskate]

Again not sure if you mean me 😅. I have severe asthma (atopic and eosinophilic). Bizarrely 1 type I’ll wheeze with (allergy), the other one I won’t. Multiple admissions, on injections for my asthma and under tertiary care and yet I STILL can be told it’s not asthma cause no wheeze (esp cause my the time I’m at hosp I don’t tend to cough either cause I’m passed that point). But it’s why it’s a unicorn trait. Cause even tho it’s relatively ‘common’ and known about, doctors don’t believe it exists...

(In Lysistratas analogy I’m a zebra with an ice cream cone on its head 😉😂)

[EmmaF91 Community Ambassador in reply to Iceskate]

Yup. But try telling that to doctors 🤦‍♀️. I have rocked up to a&e before and been told I’m fine cause no wheeze quite a few time, ignoring that my PF was 30% etc. Issue was I was in silence chest so once that was finally identified there was chaos.

Another ‘unicorn traits’ would be not having a PF that drops. I’m lucky that mine does, but for people who’s asthma only really affects their small airways the can be in a really bad state but with a ‘decent’ PF (dropped but not as low as expected). This is a recognised issue, hence why plans are PF OR symptoms/other signs but still...

[Iceskate in reply to EmmaF91]

Been trying to share a page about bronchial asthma but won't share or save to my phone. It was an omron page about it. If it fits with your asthma print it and take it to your gp.

[Lysistrata Administrator Community Ambassador]

Lol yes this isn't an official term in any way! But as you can see from my avatar I am one of them (and not a proud one, I would like to be more normal as I feel I would get better treatment).

It's based around something that doctors often get taught in medical school 'if you hear hoofbeats, think horses, not zebras'. In other words, think of more common things to explain the symptoms first (horses) and not less common things (zebra). The zebra is often used to represent rare diseases because of this - you may have seen things on social media from people with diseases like Ehlers-Danlos Syndrome describing themselves as zebras.

The problem is that while 'common things are common', sometimes the rare thing is the right answer, but sometimes this saying is interpreted more as 'rare things don't exist' instead of 'start with more common explanations but move on if they're not a good fit'.

This is where the unicorn bit comes in: asthma that's sufficiently atypical/different from the textbook idea (in presentation or in terms of the underlying biological processes) that the 'hoofbeats' belong to something some doctors don't necessarily want to acknowledge is real at all. Usually poorly understood and hard to treat.

[twinkly29 in reply to Lysistrata]

Yep.....I know a lot of people think if they have Eos asthma for example that's "worse" etc....but actually they're taken seriously and/or there are treatment options. It's harder being weird. Not necessarily worse in terms of asthma (literally no time for people who want to play that game as you know 😆) but harder in terms of being understood and getting anywhere.

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

Yes, I often have existential crises when I read asthma research papers. Often makes me feel like I don't exist, or shouldn't. Then in clinic I get the 'I wish you didn't exist as a patient, I can't really help much, so I'll pretend you don't'.

🦄🦄🦄

[ejohns in reply to Lysistrata]

Then may I join as a minor 'unicorn.' as I have had asthma a long time. Severe Persistent Asthma they say. Throw in a little COPD for good measure. Thank you for your response. I have found this to be one of the best asthma sites out there.

[mylungshateme]

Teehee hi, yep I'm another unicorn🦄 😆 i so wish I fit a text book description of "normal asthma" life would be so much simpler. Thank god for other weirdos like me on here helps so much when no one else is listening 🤣😂 x

[Hidden]

Question. I never have any wheezing. My peakflow is always good and my lung funtion measured last year is great. Yet some days I have zero energy and struggle getting up the stairs. Am I a unicorn?😐

[mylungshateme in reply to Hidden]

There are lots of things that can mimic, and or go with asthma. Look into breathing pattern disorder (BPD) also not all asthmatics wheeze, I don't.

And asthma is so variable. Do you have a peak flow? Are you having regular asthma reviews with gp or hospital respiratory team? Also lots of other things can cause fatigue, so gp will probably do bloods etc.

[Hidden in reply to mylungshateme]

Thanks for responding mylungshateme. I have a peak flow, I'm under a respiratory consultant. Had bloods checked and all came back clear.I had recent CT scans on my chest and sinuses. Chest came back no sign of Bronchiectasis, so I've been misdiagnosed for over 15 years. Waiting for my next appointment with my consultant to see if there's a problem with sinuses. I have to clear my chest of mucus every day. Hopefully something will turn up.

[Dogruff]

As my tests results start arriving, it’s starting to look more and more like a unicorn too!

[Yellow75]

Thanks for post, and love discussion on this. 😂Asthma is a funny old thing.