Rare Disease - Share your Colours
Rare Disease Day is Feb 28 Check out the Masterpost (2022) and the 2023 Masterpost for activities!
Share your COLOURS
If you have a rare disease, share the colours connected to it/the colour from the awareness ribbon. If there is no connected colour tell us what you would pick?
Don't have a rare disease? Do the above for a rare disease of your choice.
BONUS! Teach us a bit about the rare disease.
Chiari Malformation. 💜
While I have it I am having to go through other testing. A lot of Drs want to say it's not the cause of all my symptoms and that's very common until a chiari specialist is found. I am fighting to get test for dysautonomia. This involves so many systems of the body.
Hey @UnicornRainbows7. I have a form of dysautonomia. It does affect many body systems but you've got this! If you ever need to talk I'm here!
Thanks so much!! It's so exhausting!
Very educational and informative. Thank you to everyone taking part in this. It is a great joy to read all of your comments and learn about new medical complications.
Best of luck to everyone in this thread, and a big thank you to 7Cups for posting this.
Hello everyone! I have Behcets disease. It doesn’t have its own color but it’s a rare autoimmune disease so it falls under that ribbon. Wishing you all luck in your treatments and life with you illnesses!
@Saphie225, thanks for sharing! I also have an autoimmune condition - it isn't fun but it is teaching me a lot about myself (in a good way)!
Aw they can be rough sometimes! I feel like mine robbed me of alot of my teenage years and forced me to mature faster. Do you mind if I ask what yours is?
@Saphie225, I have POTS (Postural Orthostatic Tachycardia Syndrome). It sucks because half the time I can't get out of bed or faint. I fortunately have amazing roommates that are there to support me through it.
@wonderfulRainbow817 Aw I’m sorry to hear that! That is a rough one! I’m glad you have support!