Discover and read the best of Twitter Threads about #raredisease
Most recents (4)
1/I've said many times that I am poor because I am unemployed (except for my writing) and I am unemployed because I am disabled.
I am now officially rejecting that shit.
I am still disabled. I still am not employed.
#Disability #ChronicIllness #poverty
I am now officially rejecting that shit.
I am still disabled. I still am not employed.
#Disability #ChronicIllness #poverty
2/But the reason I am unemployed is because society has deemed me disposable. This isn't on me.
#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
3/It's because society has decided the WANTS of the abled (specifically in my case, to use fragrance and decorate with balloons) are more important than my survival. This isn't on me.
#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
THREAD FOLLOWS: If you didn’t get to read my article, I’m going to share the medically inappropriate #BCBSTN #Idursulfase #medicalpolicy and the denials we’ve received as part of that.
melissahogan.me/bcbs-tn-wants-…
melissahogan.me/bcbs-tn-wants-…
Quick Primer on ultra #raredisease #HunterSyndrome: multi-system disease physically affecting bones, joints, liver, spleen, heart, airway, nervous system, auditory system causing progressive damage, function loss, pain, enlarged organs, carpal tunnel, hearing loss 
2/3 of #HunterSyndrome patients also suffer cognitive impairment, behavioral challenges like combo ADHD/autism/OCD/SPD early in life. Some never learn to speak. Difficulty following basic commands, can’t follow sustained or complex requests.
.@Doug_Lind_Say shares being a late bloomer as a kid. He got sick a junior summer during college, he was told he had mono. His life got worse, not better. #WTFix
He realized he probably had the condition his mother had. He had long had a vision of being a man of destiny. He was in bed 22 hours a day. Walk about 50 ft. Exceeding that he would be worse. #WTFix
The medical community offered @Doug_Lind_Say no home. He looked ahead and knew he could not follow his mother’s health path. A mentor shared if you want to make whatever everyone else makes, then you can, if you want something different you have to do something different. #WTFix
How to stand out?
Have you ever shared a pink, red, or blue ribbon or donated during an awareness campaign? Did most of your friends already know about that disease? /1
Have you ever shared a pink, red, or blue ribbon or donated during an awareness campaign? Did most of your friends already know about that disease? /1
For #rarediseases, awareness days are TRULY vital to educate people about diseases most of the general public have never heard of.
And if they’ve never heard of it, it’s hard to have sympathy/empathy, and this hard for groups to generate funding for research.
And if they’ve never heard of it, it’s hard to have sympathy/empathy, and this hard for groups to generate funding for research.
And when a disease is rare, by its nature, few are affected, so that equals:
- fewer people to start and run organizations,
- fewer friends, families, and companies to donate,
- fewer dollars to fund treatments and cures.
- fewer people to start and run organizations,
- fewer friends, families, and companies to donate,
- fewer dollars to fund treatments and cures.
