Rare Disease Day 2019

This year, for Rare Disease Day, I wanted to do something a little different.

This fundraising and awareness campaign is to show how many people suffer from rare diseases. The previous link includes a comprehensive list of what is considered to be a rare disease - with over 1200 diseases in the database - and includes a button link on the page to donate.

I suffer from a disease on that list called Hereditary Angioedema.
It essentially causes swelling - in any area of my body - and can be triggered with physical trauma (like bumping into a wall, stubbing a toe, or worse), drastic emotional changes, or peaks in adrenaline. Swelling often occurs on the extremities, the face, legs, arms, hands, feet, etc... but can also happen in the organs. My most common place of internal swelling used to be my intestines and potentially my pancreas, but now it seems to have shifted into my esophagus and trachea, my bladder, and a few other internal spots.

In addition to HAE, although Age-Related Macular Degeneration is not found on the list of rare diseases, the early onset of Macular Degeneration is a rare occurrence. It was even deemed impossible according to every ophthalmologist I have ever seen - until they saw it within my eyes. Now it is a concrete diagnosis with an unknown cause. Essentially my eyes - on the inside - look as though they are over 70 years old. While AMD is considered a fairly common illness in the elderly, it is not well documented in patients under the age of 65 years of age.

This year, since I have been doodling and experimenting with painting, I decided to try and create some artwork for Rare Disease Day specifically.
The original logo includes three handprints in green, pink, and turquoise. I wanted to do a spin on that logo with this piece. So it has a multi-coloured ribbon in the centre, for the green hand print I painted a bunch of leaves in various shades of green, I painted pink and red florals for the pink hand print, and I painted feathers in blues and purples for the turquoise handprint.
It is not just about solidarity. It is not just about showing your rare making your mark. It is about owning your body, in all its faults. It is about loving yourself and finding beauty in the mess. Rare is beautiful. Disease, however painful and uncomfortable it may be, usually opens our eyes to the beauty in the world and encourages us to see the brighter side of things.
That is something to be grateful for.

Help spread the word about rare diseases, and feel free to share the art piece.
I would encourage everyone to jump onto Twitter or Instagram and check out all of the posts including #ShowYourRare to see all of the amazing people and all of their rare stories.