Latest posts tagged with #FDMAS on Bluesky
Re-upping this b/c it is #RareDiseaseDay & I would like you to learn something about #FDMAS. We learned the hard way about the particular difficulties of #RareDisease. It is important for the public to know that there are significant road blocks that only #PublicPolicy can solve. #cdnpoli #onpoli
Infographic about the even distribution of FD globally
4/4 - One of the really interesting things about #FDMAS is that it appears evenly around world, though in a random way. For syndromes like this, #OpenBorders & #GlobalMobility matters, especially for researchers & patients. We need to build a global community that supports the free flow of knowledge
Info graphic about FD MAS misdiagnosis.
3/4 - Because #FDMAS is a #RareDisease, treatment is costly. We have had to fight for insurance to cover a drug that costs $20k/year; we were denied coverage for another drug that is about $200k/year. Ideal treatment is hindered by cost. No thank you for our insurance company, who makes life harder.
Infographic about FD MAS.
Do you know about #fibrousdysplasia or #McCuneAlbrightsyndrome? I didn’t until relatively recently. #FDMAS is a rare genetic syndrome. As a #RareDisease there are few good treatment options & they are very expensive. For #FDMASGlobalAwarenessWeek I want to share my family’s experience with it - 1/4
I know developing my own protocol to thwart injury is a very human survival response. Esp since #FDMAS is a rare condition & we write our own user manuals.
I also know it's the same ableist angle that wants to believe we have control, that Correct Behavior will be rewarded w Avoiding Disability.
CW broken bones
Infuriating that you can do everything "right" and it doesn't save you. A lifetime w #FDMAS and you'd think I'd have fully relinquished the illusion of control. I woke up w the rib aches that predicted a microfracture. Followed my best protocol. Let my guard down. 14 hrs later... 💥😩
I used to have daydreams (more like waking nightmares) about what my life would have been like with my rare fragile bone condition #FDMAS if I'd been born anytime before the 1980s. The specter of it haunts me, the more I learn about #DisabilityHistory. 5/
