i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.
i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.
CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.
those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.
there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.
living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.
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[ Character Impressions 7 - I’m not crying… I’m BAWLING ] 😭😭😭
-Hannibal showing dads how it’s done 😤
-Coirpre is so precious 🥺 when he blesses Altena with +5 RES? 🥺🥺🥺😭😭😭
-Ceddy bear 🥰 he’s such a sweetheart!
-FEE 💚 my solo carry (I sent Altena to join her but you get her at the end of the game so…)
-ARTHUR 💜 I can’t stop crying 😭 I love him sm
-Tine, purple chibi moon? 🌙 I like how despite her looks, she hits like a truck, a truck made of lightning ⚡️ 🛻 ⚡️
-Silvia, who? LENE BB (despite everything, Silvia had awesome kids, ty Silvia 🫡 )
-Ares is a monster 😳 Mysteltainn > all 🗡️ 🩸 I feel like he could single-handedly beat the game. (I miss Eldy tho… still mad about him 😡)
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Du hast den Streit gesucht, doch ich war nie dein Gegenspieler.
Zate ft. Ced - Scheiß drauf (via @in-liebe-der-boden)
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plss they're so cute and sleepy
I commissioned this art from Moccha Kofii on Twitter
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at my previous job, one of my accommodations was having a chair available at all times that i could sit down on. on multiple occasions, customers would remark “it’s so nice that they let you sit down,” and i’d go “oh, i’m actually disabled and this is an accommodation. :)” tell me why nearly everyone would always reply with “oh gosh i’m so sorry!” and then proceed to act uneasy. like ?? why are they even apologizing, do they think they offended me ? and does bringing up my disability make abled people that uncomfortable ? i suppose i could have instead responded with “yeah, it is nice they let me sit.” but i didn’t, because it is so, SO incredibly important to normalize people having disabilities and needing accommodations. it’s okay to talk about it and even ask questions, as long as you’re respectful. “disabled” is not a dirty, offensive word; it is what i am !
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