RareDiseasePatient
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rarediseasepatient.bsky.social
RareDiseasePatient
@rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
Pinned
I'm suffering, with rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al.

I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to these, 10 Dem Senators either.

@everylifeorg.bsky.social
March 15, 2025 at 5:35 AM
⚠️SAVE MEDICAID & HHS: SAVE MY LIFE.⚠️

I'm bedridden, with comorbid, rare, fatal diseases, in a #NursingHome, paid by #Medicaid (as is true of 2/3 of all US nursing-home patients). If Medicaid is cut, I will be homeless & die.

Contact info. for key Senators is in my posted letter.

#SaveMedicaid
🔥 @aoc.bsky.social : “The numbers don’t add up. $880 BILLION is a devastating cut to Medicaid, and an attack on Medicare. Anyone who votes for this budget is voting to cut Medicaid and gut health care for Medicare recipients in 🇺🇸.”

Full: www.instagram.com/reel/DGg7cr0...
March 5, 2025 at 9:49 AM
As International #WomensDay approaches, a reminder for the US: It wasn't #witches who were burned, drowned, & tortured; it was #women. & we are repeating history.

There are times in history to gather #magic for common cause.

#witch #witchsky #WitchesofBluesky #Salem #SalemWitchTrials #RoeVWade
March 4, 2025 at 6:46 AM
After the #NIH- #FDA #RareDiseaseDay event ☠️, & slashing of #HHS depts, I ask the #RareDiseaseCaucus to address the #RareDisease community.

Letters asking Sen Wicker & Rep Bilirakis to resign their Caucus chairs are in my feed.

@amyklobuchar.com @dorismatsui.bsky.social
@everylifeorg.bsky.social
Very sad to see that #RareDiseaseDay event at FDA-NIH has been cancelled. Cuts that limit rare disease research and cures (1) leave patients behind, and (2) forfeit precious opportunity to learn more about common human diseases.

udnf.org/udnf-stateme...
Statement on Rare Disease Day, Research and Funding - UDNF
UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community
udnf.org
March 1, 2025 at 4:52 AM
28 FEB, 2025
#RareDiseaseDay
& Economic Blackout Day

Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients.

About:
instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
February 27, 2025 at 1:34 PM
28 FEB is #RareDiseaseDay. There are 30,000,000 rare-disease patients in the US. NIH & FDA cuts stopped our clinical trials & treatments. Now, Medicaid cuts will kill us.

When boycotting on 2/28, please give the $ you save to the fundraisers of rare-disease patients.

www.yahoo.com/news/no-amaz...
'No Amazon, no Walmart, no fast food': What's behind the 'Feb. 28 economic blackout'
The People's Union USA, a self-described “grassroots movement” founded by John Schwarz, is encouraging Americans to refrain from making non-essential purchases on Friday.
www.yahoo.com
February 26, 2025 at 8:15 AM
URGENT: SAVE MEDICAID TO SAVE MY LIFE:
I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead.

Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
February 25, 2025 at 8:44 PM
⚠️URGENT: MEDICAID,⚠️
DISABILITY, & NURSING HOMES:

I am severely disabled, with rare, fatal diseases, in a skilled nursing home.

⚠️If Medicaid is cut, I will be immediately HOMELESS & DEAD.⚠️

PLEASE SAVE MEDICAID, & SAVE MY LIFE:
Call & write to House Representatives before votes on 2/24-2/25.
Republicans want to kill your grandparents.

They want to cut Medicaid by nearly a trillion bucks so billionaires keep more money in their accounts.

Medicaid pays for nursing home care.
February 24, 2025 at 4:51 AM
⚠️URGENT: MEDICAID,⚠️
DISABILITY, & NURSING HOMES:

I am severely disabled, with rare, fatal diseases, in a skilled nursing home.

⚠️If Medicaid is cut, I will be immediately HOMELESS & DEAD.⚠️

PLEASE SAVE MEDICAID, & SAVE MY LIFE:
Call & write to your House Representative before votes on 2/24-2/25.
aclu.org ACLU @aclu.org · Feb 22
The House could vote next week on drastic cuts to Medicaid that would gut critical programs that protect the civil rights and dignity of millions of Americans — including people with disabilities.

Contact your member of Congress: No cuts to Medicaid.
Congress: Save Medicaid Now
Politicians are attempting to pass devastating cuts to Medicaid right now and we must act fast. Send a message telling your member of Congress to fight back now.
action.aclu.org
February 24, 2025 at 4:40 AM
Just a point of order:
@maddow.msnbc.com tonight: "In all likelihood, you don't have a family crest."
My mother's family name was #Davies. 😕🤦🏼‍♀️
#FamilyCrest

On a more serious note:
I'll try to post my letter to Senators to vote NO on #RFK tonight. I'm #disabled, in a #NursingHome, on #Medicaid.
January 30, 2025 at 4:54 AM
Please don't forget the #disabled as a historic target & casualty.
First, they came for the immigrants, and I did not speak out—
Because I was not an immigrant.

Then they came for the homeless, and I did not speak out—
Because I was not homeless.

Then they came for the...

Are we really going to sit back and just watch this?
November 21, 2024 at 4:07 AM
Reposted by RareDiseasePatient
How many of these do we have?
November 20, 2024 at 2:10 PM
November 20, 2024 at 6:20 AM
My contention since the 110th Congress: All persons with a penis living or traveling in the US must be required to have a vasectomy. Temporary reversal may be applied for and adjudicated by panels of qualified persons with a uterus. Until then, I believe that Lysistrata had it right all along.
November 16, 2024 at 10:05 PM
Reposted by RareDiseasePatient
I love that so many are advocating for libraries on my TL. If you don't know already, you can connect your library card to Libby, which allows you to read books on the Kindle store for FREE. #Booksky
November 12, 2024 at 1:44 PM
Reposted by RareDiseasePatient
I’m guessing I’m in some sort of starter pack about COVID, Long COVID and or masking & mitigations.
I have gained over a 1k followers and and somewhat overwhelmed.
Thank you to whoever included me. I’ll try to live up to your recommendation.
Masks Keep Us Safe. xo
November 13, 2024 at 2:14 AM