Skip to main content Skip to bottom nav

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.

40
AffyAvo OP February 26th, 2022

If you would like to add/remove yourself from our automatic taglist, please click HERE


@777Bre777 @adaptablePomegranate1587 @adequatelyInadequate @adventurousBranch3786 @AffyAvo @amusingTalker1267 @Arsalanahmed @Ashleylovescats @AttentiveEar @Averayne93 @Azalea98 @azuladragon34 @BeyondTheInvisible @BlindGrapefruit @bouncyVoice4149 @Breezy2013 @CaringBrit @CheeryPotato @CheerySandi @ChildGoddessFlute @Colorfulcatsofhope @considerateBunny7436 @considerateParadise6717 @Disneywoman @DoISayIt @DylanMark @Edobre399 @Emiliako @emotionalTalker2260 @enthusiasticTortoise6681 @fairmindedWater1140 @Fireskye13 @friendlyEars8792 @goldenSpruce1512 @IcedCoffee211109 @InfiniteThoughts2k19 @Jamesjones10123 @JoyfulUnicorn @JoyIntoDarkness @K87 @killaj0ule @kwheelz @lightTriangle7748 @LikeABirdWithoutWings @lovelySun2900 @LoveMyRotty @magnifiedfaith @ManinblacK @MikuoniandBlueCheese @MistyMagic @mnhtx3 @modestOcean1286 @moosprbrk @MyNameIsNicole @NaomiR @NevaehRose @OneErased @pinkbunnywabbit @Pixiechu @PotFullOfSky2020 @rainbowVibes @Raysofsunshineandrainbow2005 @redGrapes1822 @Redheadmadeofglitter94 @repen13 @sabeyesofblue3535 @SmolBurrahobbit12 @specialPurple1582 @StarsOrchidsOwls @sunshinegiraffe123 @TimidBear @turquoiseHemlock900 @u2canwin @wahmbrenda @WeedyGarden @wonderfulRainbow817 @xandia @Zed786

kwheelz February 26th, 2022

I have Osteogenesis Imperfecta (OI), also known as brittle bones disease! Colors associated with OI include blue (like our awareness ribbon) and yellow in celebration of Wishbone Day, a day to raise awareness for OI and celebrate our community! You can learn more about OI and its different types here: https://oif.org,informationcenter,about-oi,

2 replies
AffyAvo OP February 26th, 2022

@kwheelz Thanks for sharing that! Wishbone day is such a smart name to bring in awareness!

1 reply
kwheelz February 26th, 2022

Yeah, and Wishbone Day is really fun! We even have a wishbone-inspired mascot called Wishy, lol! It's an international day off awareness so folks organize picnics and events all over the world! It's all very chill, brightly decorated, and family-friendly; at least in my experience. May 6th is the official awareness day, though individual celebrations may take place anytime around that week or so.

load more
load more
AffyAvo OP February 26th, 2022

I have Hereditary Angioedema

The ribbon is a bit complicated - half of it is denim as a play on jean/gene, as it's a genetic disorder. The other half is zebra print with HAE embedded in the print.

The zebra print actually is actually used to represent all rare disease as there's a popular saying in medicine - when you hear hoofprints think horses, not zebras. This is encouraging doctors to think of common things first, not rare diseases. Those of us with rare conditions need these to be considered more quickly though! So consider the zebras 😊

2 replies
Zoup February 28th, 2022

@AffyAvo

I also have HAE!

2 replies
AffyAvo OP March 4th, 2022

@Zoup Oh wow! I think you're the first person I have met when it wasn't a place geared towards it.

1 reply
Zoup March 4th, 2022

@AffyAvo

You are definitely the first I have met! I don't use forums very often but it's nice to be able to meet someone who relates. I was diagnosed in 2018 when I was 14.

load more
load more
load more
wonderfulRainbow817 February 26th, 2022

I have Hereditary Neuropathy with Liabilities to Pressure Palsies (HNPP). My ribbon would be purple as Neuropathy in genera is purple.

HNPP is a condition that affects the peripheral system. If I sit, stand, or put any sort of pressure on any nerves in my body it can create palsies where I lose all feeling in the area or burning, stinging, sharp pain. The numbness can last for weeks at an end. All it takes us is 5 seconds to become numb for weekends on end.

My entire ribbon would be part purple and part zebra stripes as I also have Ehlers-Danlos Syndrome (EDS). There are many different types of EDs but I specifically have hEDS which is hypermobility of my joints thus I dislocate my joints a lot. The skin can also be translucent, elastic, and bruise easily.

1 reply
AffyAvo OP February 27th, 2022

@wonderfulRainbow817 Thanks for sharing! I've dealt with chronic, mostly mild paresthesia. So I can imagine what dealing with this would likely feel like! 😣

load more
theboymoana February 28th, 2022

I have very rare disease (less then 1 person every million diagnose this) does not even have a name is so rare called 13q deletion. Part of my 13th chromosome is not there. I don’t actually know if it has a color or anything. But if I pick would pick blue and yellow because there my favorite colors.


There’s not a lot of people with 13q deletion and all is different to every person because depend where is deleted changes what genes it messes up. To me it is why I am deaf and have learning disabilities and intellectual disability and adhd and why I grow really slow!

2 replies
wonderfulRainbow817 February 28th, 2022

@theboymoana, thanks for sharing! @EverywhereEverything also has some experience with this and I think it is super cool that you've both shared information about it!

1 reply
EverywhereEverything February 28th, 2022

@wonderfulRainbow817 I was talking about @theboymoana! I think it's awesome that he has a day for him, and I wanted to mention him because he means a lot to me!🌱

load more
load more
audienta February 28th, 2022

@AffyAvo

Thank you for this very important post!

I have aquagenic urticaria, known as water allergy. There's more information about it here: https://www.healthline.com/health/aquagenic-urticaria

I don't think that there's a ribbon for it since it's really rare. I'd probably make it blue for water.

2 replies
wonderfulRainbow817 February 28th, 2022

@audienta

Oh wow! I've heard of this before but didn't know too much until I read that article. I can only imagine how painful it is when any source including your own sweat and tears. It just shows how strong you are though to go through this each day!

1 reply
audienta February 28th, 2022

@wonderfulRainbow817

It's kind of crazy, what human bodies can do! Thankfully, I have found a very helpful medication and am nearly symptomfree! 😊

load more
load more
Faithmagic February 28th, 2022

@AffyAvo I don't know if this is a rare disease, but I have Rosecea and acne, they make my skin appear red and swollen. I look ugly, I hate them.. I hope they are gone soon. I just wanted to share this, I hope it's okay to share it in this post.

1 reply
wonderfulRainbow817 February 28th, 2022

Hey @Faithmagic! It is perfectly okay to share! They are not rare diseases but are very real medical conditions. I can only imagine how painful the swollen feeling probably is. Hang in there!

1 reply
Faithmagic March 7th, 2022

@wonderfulRainbow817 Thank you!

load more
load more
malkat1987 February 28th, 2022

I have Russell-Silver syndrome, a rare form of dwarfism. Since there is no awareness ribbon (that I'm aware of) for dwarfism, I'll go with zebra print.

Here is more information-https://rarediseases.org/rare-diseases/russell-silver-syndrome/

1 reply
wonderfulRainbow817 February 28th, 2022

@malkat1987, thanks for sharing! It could be a green zebra stripe ribbon as green is often used for different types of dwarfism.

load more
EverywhereEverything February 28th, 2022

🌱The disease is called 13 Chromosome Deletion, and the only color of the ribbon I could find it associated with is the Denim Ribbon.🌱

🌱I personally do not have this, but I have someone I look to as a little brother who who does have it. This disease basically deletes genetic material from the 13th chromosome as you are developing in the womb. This disease varies in severity, but for him it caused him to be deaf, and he has some learning disabilities.🌱

☀️🌱He is a very precious person to me so I am very happy there is a day to recognize this.🌱

2 replies
wonderfulRainbow817 February 28th, 2022

@EverywhereEverything, thank you for sharing! A denim ribbon sounds pretty cool looking!

theboymoana March 1st, 2022

@EverywhereEverything share about me! thank you share about mine I want people to know about it because no one really does. And like the plants best big sister Ella Mae! It’s a good day they have this so people can learn about new things

load more
rachsxo February 28th, 2022

While I myself do not have a rare disease, one of my cousins has Malan Syndrome – a genetic disorder that is so rare it's not even in the NORD database! It is estimated that there are no more than 150 cases across the world. Characteristics of Malan Syndrome include macrocephaly, gigantism, intellectual deficits, and developmental delays. The Malan Syndrome Ribbon is blue with a yellow outline. My cousin is one of the sweetest kids I've ever had the pleasure of knowing and I would not change a single thing about her.

Happy Rare Disease Day to all observing!

1 reply
wonderfulRainbow817 February 28th, 2022

Hey @rachsxo! Thank you for sharing about Malan Syndrome! I have never heard of it before so it was interesting to learn about this!

load more