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Rare Disease - Share your Colours

AffyAvo February 26th, 2022

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.

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SilentSerenityy February 28th, 2022

@AffyAvo

EDS seems to go more by zebra stripes than a certain colour from what I see.

1 reply
AffyAvo OP March 4th, 2022

@SilentSerenityy Thanks for sharing! More stripes _1646355486.image.png

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UnicornRainbows7 March 1st, 2022

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.

2 replies
wonderfulRainbow817 March 1st, 2022

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!

1 reply
UnicornRainbows7 March 1st, 2022

Thanks so much!! It's so exhausting!

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justasmallwarrior March 1st, 2022

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.

1 reply
AffyAvo OP March 4th, 2022

@justasmallwarrior Thanks for the show of support!

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Saphie225 March 2nd, 2022

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!

4 replies
wonderfulRainbow817 March 2nd, 2022

@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)!

3 replies
Saphie225 March 3rd, 2022

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?

2 replies
wonderfulRainbow817 March 3rd, 2022

@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.

1 reply
Saphie225 March 3rd, 2022

@wonderfulRainbow817 Aw I’m sorry to hear that! That is a rough one! I’m glad you have support!

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