Hello, I Have Autosomal Dominant Compelling Helio-Ophthalmic Outburst Syndrome (ACHOO)

Thanks to my mast cell disease I have really bad sunlight sensitivity now. I’m not allergic to the sun, which some people are, but I am triggered by it despite the medicines doing their thing.

I grew up in sunny California (shh!) and until not long ago I used to be able to handle being outside in bright sunlight pretty well as long as I stayed in the shade and squinted a lot. Now I have to wear dark sunglasses whenever I leave the house. When I’m inside I keep the shades mostly closed, blocking out the brutally penetrating light.

 

I even have to use low watt light bulbs and rarely turn on lights unless I have to, otherwise I pay for it.

So I am basically forced to live life in a dim, practically sunless world. I feel like I would do really well on Pluto if I could get my organic grocery delivery service to come out there.

Heck, I would even pay the extra $8.00 delivery fee for that!

Along with sunlight sensitivity I also apparently have the gene for Autosomal Dominant Compelling Helio-Ophthalmic Outburst Syndrome (ACHOO), otherwise known as photic sneezing or ‘sun sneezing’.

Meaning I sneeze when I look at the sun, or any bright light, really.

It’s not actually due to a gene, per se, but rather a single nucleotide swap (C instead of T) in an intergenic region on chromosome 2. Derek over at Veritasium explains it better:


I don’t just sneeze once, though. Thanks to my wonky mast cells it starts a chain reaction for me that makes me sneeze multiple times which in turn causes degranulation from head to toe, so obviously I avoid looking at the sun (or any bright light) directly so that doesn’t happen.

Of course that’s not difficult since I have sunlight sensitivity to begin with, like I mentioned already. I avoid the sun like the plague now, which is kind of sad. It helps that I’m a night owl anyway, I guess.

It’s all part of life in the mast lane…

ACHOO!

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