How Many Things Can Be Wrong in One Set of Eyes?

Oh my eyes. 

I love my eyes... well, I love the look of my eyes. They have been arguably my best feature. 

Underneath, however, my eyes are problematic. 

I have this eye disease - with no consensus on a diagnosis. Some ophthalmologists believe it is a rare early onset of Dry Age-Related Macular Degeneration. Others believe it is a rare recessive form of Familial Drusen. There's a possibility of a genetic factor, there is a possibility of a complement series factor, but either way, we all agree that my eyes are not what they should be. They're behaving like the eyes of an elderly individual - filled with drusen and, more recently, Geographic Atrophy. 

Along with the strange eye disease, these eyes also include a more common issue: Astigmatism in both eyes. 

I happened to see my Optometrist today, with a couple of new symptoms. It turns out that I have some Vertical Phoria - which is causing some double vision and problems with visual focus. 

Essentially my eyes are out of alignment - so one eye is pulling the visual image up, the other is pulling the visual image down, so when my eyes are open, I'm getting two images on top of each other. 

I'm all googly-eyed. 

So I needed new glasses today. 

My lenses have to have my correct prescription, of course, (which is about -5 in both eyes), be corrected for Astigmatism, and they have to be these new Prism lenses to correct the googly-ness. Unfortunately, nothing can help the symptoms from the macular degeneration-type disease, but I do get transitions lenses so that I don't have to wear massive sunglasses on top of my glasses. 

It's amazing how many things can be weird, or off, or wrong, or problematic, in one set of eyes.  Eyes that are in their thirties. 

Rare Disease Day 2018

Today - February 28 - is Rare Disease Day

Attached here is the link to an info page that also includes a video, talking about how many people are affected by various types of rare diseases, and how to spread the word and get involved.

There are many difficult aspects of being diagnosed with illness - whether it is common or rare - but one of the greatest challenges is that any disease does not have 'one face'. It is nearly impossible to tell, at first glance, what kind of health struggles someone may or may not be dealing with.

The magnitude - the far reach across the world - that illness can have is devastating, and raising awareness for rare diseases is a priority.
It seems ironic that approximately 300 million people are touched by a 'rare' disease. Not so rare, is it?
So step out and #showyourrare.
Show that it is not a problem that can just be ignored. Show your friends, your family, your coworkers, your acquaintances, that rare disease also deserves awareness, time, effort, and funding.
*Most Importantly*
This kind of campaign helps to encourage others to simply look up what these diseases are and what kind of suffering they can cause. It takes ten seconds to do a quick Google search to find out what some of these rare diseases are and how they can affect people. We each hold devices that can provide endless amounts of information. So if you do nothing else, I ask that you simply look up the diseases that your friends and colleagues might mention during this campaign - or ask us about it!

This is my rare:
Apart from the not-so-rare diagnosis of Crohn's Disease, Migraines, Raynaud's, an AVM in my lung, tachycardia, and Psoriasis, I have been diagnosed with several diseases that can be considered rare:

▪Early Onset Age-Related Macular Degeneration
▪Hereditary Angioedema Type III
▪Hashimoto's Thyroiditis
▪Ankylosing Spondylitis

So get out there and Show Your Rare. Find out how many rare diseases there are that your friends are affected by. Look up the details of illnesses you may have heard about but do not yet understand. And share share share: share your experiences, share the experiences of others, share the hashtags and the photos and the attempt to bring awareness to a not-so-rare issue.