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.