Gonzonzardy it's been a long time since I posted my last blog. My last entry was before issue 13 was released, and now we're on the cusp of release issue 16! I'm going to have to remember to post more often.
Anyway, as you can probably tell from the title, it's Rare Disease Day. Some of you may know that I myself have Aniridia, a condition that affects about 1 in 50,000-100,000 newborns worldwide. Readers who have really been paying attention might know that this very same condition was one of a few things that inspired the Zip in the first place.
It manifests itself in diverse range of ways since many other conditions are associated with it, but aniridia causes highly dilated pupils, or a lack of iris altogether. It can be caused genetically or through environmental factors.
My aniridia is genetic, caused by a sporadic mutation. I don't have any irises at all, and my visual acuity in both eyes is 6/60, which is not correctable with glasses (no matter how many times strangers who see me reading comics on the bus insist that it is!)
Actual picture of one of my eyes. Not pictured: irises.
For frame of reference "6/60" means that the clarity which I am able to see objects at 6 metres is the same as the clarity with which most people would be able to see objects at 60. I have high pressure in my eyes, so I have to take eyedrops to reduce my risk of glaucoma. I also have cataracts, nystagmus, and wandering eye.
Also I know all this from memory because I've had like a million doctors explain it to me throughout the course of my life.
Though some people with aniridia can be, I'm not personally affected by learning disabilities (although you'd be surprised how many people will assume I am simply because they find out I'm visually impaired).
The reason I've chosen to talk about all this is because I came up with Zip as an analogy for what it's like to feel like you're an outsider in society. I used my own condition to fuel the passion in that mission statement, but I also try to make the message apply to anyone who's had it tough because they were different.
My own experiences do provide a lot of material, but I'm always trying to branch out and learn about other peoples' experiences too. Today's a day where people with rare conditions are sharing their perspectives on social media with the hashtag: #RareDiseaseDay and so if you or someone you know has something to say, I'd love to hear about it.
Tweet stuff to me at @adventuresofzip on Twitter.
Or check out our Facebook page at: facebook.com/adventuresofzip
And don't forget to use that hashtag! #RareDiseaseDay
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