Rare Disease - Share your Colours

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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,

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 😊

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.

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!

@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.

@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.

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/

🌱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.🌱

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!