raredisease-disordercultureis

[raredisease-disordercultureis]

Rare disease culture is telling little children 'ThEy tOok mY knEeS' when they ask why youre in a wheelchair because youre not about to explain university level biology to them

^

#rare disease #rare disease/disorder culture #rare disease culture #rare disorder culture #rare disorder #actually disabled #oops forgot to use the queue #I’ll remember next time #hopefully

[raredisease-disordercultureis]

rare disease culture is the wikipedia page having the most extensive information about your disease, compared to the actual websites from organizations

^

#rare disease #rare disease/disorder culture #rare disorder #rare disease culture #rare disorder culture #actually disabled

[raredisease-disordercultureis]

rare disease culture is okay but am I *really* rare enough?

^

#rare disease #rare disease/disorder culture #rare disorder #actually disabled #rare disease culture #rare disorder culture

[raredisease-disordercultureis]

rare disease culture is having to argue with doctors about the basic facts of your condition

^

#rare disease #rare disease/disorder culture #actually disabled #rare disease culture #rare disorder culture #rare disorder

[raredisease-disordercultureis]

rare disease culture is knowing more about your rare disease than your medical team

^

#HSHSHHS DYING I ACTUALLY HAVE ASKS #rare disease/disorder culture #rare disease culture #rare disorder culture #rare disease #actually disabled #I should’ve used the queue but oh well I’ll do that for the next ask

[raredisease-disordercultureis]

February 29 is Rare Disease Day.

Because it sucks to be a medical zebra.

#not culture

[raredisease-disordercultureis]

The last day of February, international campaign for Rare Disease Day!

I was born with Fibrodysplasia Ossificans Progressiva. 1 in 2 million, 800 cases globally, 4k missing, 87% misdiagnosed as cancer or child abuse. My muscles & connective tissues turn into bone permanently.

This is my second needlefelt sculpture dedicated to it, in honour of the official mascot, the rare zebra! #ShowYourStripes 🫏

"When you hear hoofbeats, think horses, not zebras."

In medicine doctors are taught to ignore mysterious symptoms, don't research the unknown, and only recognise easy, common diagnosis. Termed in the late 1940s by Dr. Theodore Woodward, professor at the University of Maryland School of Medicine.

#not culture

[raredisease-disordercultureis]

happy rare disease day to everyone with a rare disease! happy rare disease day to everyone who has an undiagnosed rare disease! happy rare disease day to people with multiple rare diseases! happy rare disease day to rare disease patients who have to constantly advocate for themselves! happy rare disease day to people with a non-genetic rare disease! happy rare disease day to people who have been misdiagnosed with a common condition that turned out to have a rare disease! happy rare disease day to patients who are always treated like objects of fascination whenever you step foot into a medical facility!

#not culture

[raredisease-disordercultureis]

hi everyone!!

i'm starting a podcast for youth and young adults with disabilities, rare diseases...or if they just feel confined by their age!

follow the journey at @tacendapodcast on instagram :)

#not culture

[raredisease-disordercultureis]

Happy rare disease day everyone!

I have Multiple Hereditary Exostoses, or MHE (though it goes by many other names). It causes (non-cancerous) tumors in the bone, which can cause different issues depending on the severity and locations.

Here’s a couple organizations focused on MHE:

♿️ 🎉 Happy Rare Disease Day!!! 🎉 ♿️

Reblog this with your rare disease (if you want)

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I have Selenon (formerly Sepn-1) Related Myopathy. It's a rare form of Congenutal Muscular Dystrophy that is usually characterized by:

Rigid Spine

Scoliosis

Muscle Weakness

Hypotonia

Limited Flexion

Poor Head Control

Restrictive Respritory

Reduced Vital Capacity and Nocturnal Hyperventilation

Here is a link to Cure CMD, one of the leading organizations in research and funding for my disease and similar diseases that fall under the umbrella of Congenital Muscular Dystrophy

#rare disease #rare disorder #not culture #rare disease day #mhe #hmo #hme

[raredisease-disordercultureis]

uhh if you saw that other post.. no u didn’t

#accidentally reblogged with this account #not culture

[raredisease-disordercultureis]

Btw I’m not inactive just not getting any asks!

#not culture #announcement

[raredisease-disordercultureis]

BIID culture is hhhuh what is this eye doing here what the fuck that should NOT be there what the FUCK

^

#rare disease/disorder culture #BIID culture #rare disease/disorder culture is #rare disease #BIID culture is #actually biid #biid

[raredisease-disordercultureis]

Just realized my asks were off, they should be on now!

[raredisease-disordercultureis]

Hello!

This is a culture-is blog for, you guessed it, people with rare diseases/disorders! Different countries/places have different classifications for what counts as a rare disease, so if you’re not sure if you count as having one, I recommend you look it up.

DNI: NSFW blogs, for my own comfort, but other than that I really can’t stop you.

———————————————— My tags are:

rare disease/disorder culture

not culture

announcement

————————————————

There will also be other tags on my posts, but those are the ones to sort by! Feel free to send in asks about anything rare disease related as long as it’s sfw, I’m a minor!

#rare disease/disorder culture #not culture #announcement #rare disease #rare disorder #actually disabled #chronic pain #chronically ill #chronic illness #chronic fatigue #disability #disabled #culture is #culture is blog #send asks #I don’t want this account to die