JenOfAllTrades
@vengefulraven.bsky.social
Justice seeker, book devourer, art admirer, science enthusiast, rare chronic illness fighter.
Pinned
JenOfAllTrades
@vengefulraven.bsky.social
· May 11
🔬 Rare disease & endothelial biology researchers:
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
I went to X and thought I’d have a little fun.
I was banned in less than 24 hours. 😂
I was banned in less than 24 hours. 😂
June 17, 2025 at 1:32 AM
I went to X and thought I’d have a little fun.
I was banned in less than 24 hours. 😂
I was banned in less than 24 hours. 😂
Today was the last try day for me. Today was the I’m officially giving up. Today was the last doctor, the last hospital, the last hope.
Today was the day. Today they put the pieces together. Today they said there’s hope/help. Today, they knew.
My last try, my last spark of hope was the day.
Today was the day. Today they put the pieces together. Today they said there’s hope/help. Today, they knew.
My last try, my last spark of hope was the day.
June 13, 2025 at 2:42 AM
Today was the last try day for me. Today was the I’m officially giving up. Today was the last doctor, the last hospital, the last hope.
Today was the day. Today they put the pieces together. Today they said there’s hope/help. Today, they knew.
My last try, my last spark of hope was the day.
Today was the day. Today they put the pieces together. Today they said there’s hope/help. Today, they knew.
My last try, my last spark of hope was the day.
No one ever talks about the chronic illnesses that have NO doctors, NO scientists, and NO help.
There is no hope. Just an endless tunnel of darkness waiting for the next cold/infection/reaction to end your life.
I’m on my own.
There is no hope. Just an endless tunnel of darkness waiting for the next cold/infection/reaction to end your life.
I’m on my own.
May 28, 2025 at 11:15 PM
No one ever talks about the chronic illnesses that have NO doctors, NO scientists, and NO help.
There is no hope. Just an endless tunnel of darkness waiting for the next cold/infection/reaction to end your life.
I’m on my own.
There is no hope. Just an endless tunnel of darkness waiting for the next cold/infection/reaction to end your life.
I’m on my own.
Just learned about the biohacker space.
I guess I CAN do this myself.
I guess I CAN do this myself.
May 11, 2025 at 2:15 AM
Just learned about the biohacker space.
I guess I CAN do this myself.
I guess I CAN do this myself.
🔬 Rare disease & endothelial biology researchers:
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
May 11, 2025 at 12:28 AM
🔬 Rare disease & endothelial biology researchers:
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
I have a heterozygous ANGPT1 p.Gln180His mutation with systemic dysfunction (vascular, immune). Built my own 3-page summary—looking for collab or feedback.
DM please
#ANGPT1 #RareDisease #OpenScience
I’m 100% clinically and genetically undiagnosable.
The genetic change I have is unstudied and as of now since me and just one other human has it, no one cares.
There are no doctors. There are no scientists. There is just incoming death.
Good times.
The genetic change I have is unstudied and as of now since me and just one other human has it, no one cares.
There are no doctors. There are no scientists. There is just incoming death.
Good times.
May 9, 2025 at 7:11 PM
I’m 100% clinically and genetically undiagnosable.
The genetic change I have is unstudied and as of now since me and just one other human has it, no one cares.
There are no doctors. There are no scientists. There is just incoming death.
Good times.
The genetic change I have is unstudied and as of now since me and just one other human has it, no one cares.
There are no doctors. There are no scientists. There is just incoming death.
Good times.
I was blocked today in an argument about scientists being paid off by pharmaceutical companies and Autism is from shots.
They didn’t like when I pointed out that scientists don’t just exist in America and that the conclusion is from scientists ALL OVER that have nothing to do with our companies.
They didn’t like when I pointed out that scientists don’t just exist in America and that the conclusion is from scientists ALL OVER that have nothing to do with our companies.
April 19, 2025 at 11:26 PM
I was blocked today in an argument about scientists being paid off by pharmaceutical companies and Autism is from shots.
They didn’t like when I pointed out that scientists don’t just exist in America and that the conclusion is from scientists ALL OVER that have nothing to do with our companies.
They didn’t like when I pointed out that scientists don’t just exist in America and that the conclusion is from scientists ALL OVER that have nothing to do with our companies.
I am Autistic, have a riboflavin deficiency, and a non-clinical diagnosable disease and need to see scientists.
I don’t think this new America is gonna be good for me.
I don’t think this new America is gonna be good for me.
April 17, 2025 at 11:55 PM
I am Autistic, have a riboflavin deficiency, and a non-clinical diagnosable disease and need to see scientists.
I don’t think this new America is gonna be good for me.
I don’t think this new America is gonna be good for me.
Finally getting the full genome test sent out.
We already know one change that hasn’t been studied but they’re trying to either diagnose known and rule out.
Then it gets kicked back to the Undiagnosed Disease Program, or more testing.
Hopefully this means I’ll be accepted if nothings found.
We already know one change that hasn’t been studied but they’re trying to either diagnose known and rule out.
Then it gets kicked back to the Undiagnosed Disease Program, or more testing.
Hopefully this means I’ll be accepted if nothings found.
April 7, 2025 at 9:25 PM
Finally getting the full genome test sent out.
We already know one change that hasn’t been studied but they’re trying to either diagnose known and rule out.
Then it gets kicked back to the Undiagnosed Disease Program, or more testing.
Hopefully this means I’ll be accepted if nothings found.
We already know one change that hasn’t been studied but they’re trying to either diagnose known and rule out.
Then it gets kicked back to the Undiagnosed Disease Program, or more testing.
Hopefully this means I’ll be accepted if nothings found.
Reposted by JenOfAllTrades
Faux news knows
April 2, 2025 at 11:35 AM
Faux news knows
I hate MAGA.
All these we need to stand together when they realize what they’ve done. No. Somethings are unforgivable.
Innocent man sent to one of the worst prisons possible for no reason. Nothing will be done about it.
America is DEAD.
All these we need to stand together when they realize what they’ve done. No. Somethings are unforgivable.
Innocent man sent to one of the worst prisons possible for no reason. Nothing will be done about it.
America is DEAD.
April 2, 2025 at 4:30 PM
I hate MAGA.
All these we need to stand together when they realize what they’ve done. No. Somethings are unforgivable.
Innocent man sent to one of the worst prisons possible for no reason. Nothing will be done about it.
America is DEAD.
All these we need to stand together when they realize what they’ve done. No. Somethings are unforgivable.
Innocent man sent to one of the worst prisons possible for no reason. Nothing will be done about it.
America is DEAD.
While everyone is busy with Musk no one’s watching what’s going on in Israel, Iran, and with Taiwan.
April 1, 2025 at 11:26 AM
While everyone is busy with Musk no one’s watching what’s going on in Israel, Iran, and with Taiwan.
Seeing my 6th pulmonologist. At least this one was only 1.5 hours away but I’m not hopeful.
I really don’t see a point in seeing doctors when they can’t do anything.
I really don’t see a point in seeing doctors when they can’t do anything.
March 31, 2025 at 4:53 PM
Seeing my 6th pulmonologist. At least this one was only 1.5 hours away but I’m not hopeful.
I really don’t see a point in seeing doctors when they can’t do anything.
I really don’t see a point in seeing doctors when they can’t do anything.
I really just have no hope. All I can think about is all the other me’s who don’t know they’re like me yet.
They’re still hoping for a diagnosis, hanging on for the next doctor. It’s not coming.
Other countries won’t take the me’s. There is no fleeing. So so many people are going to die.
They’re still hoping for a diagnosis, hanging on for the next doctor. It’s not coming.
Other countries won’t take the me’s. There is no fleeing. So so many people are going to die.
NIH has rescinded its scientific integrity policy. Hard to see this as anything other than clearing the way for shoddy research on things like vaccines. Regardless of the rationale, it's bad news for public health.
grants.nih.gov/grants/guide...
grants.nih.gov/grants/guide...
NOT-OD-25-080: Rescission of the Final Scientific Integrity Policy of the National Institutes of Health
NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts: Rescission of the Final Scientific Integrity Policy of the National Institutes of Health NOT-OD-25-080. OD
grants.nih.gov
March 30, 2025 at 5:38 AM
I really just have no hope. All I can think about is all the other me’s who don’t know they’re like me yet.
They’re still hoping for a diagnosis, hanging on for the next doctor. It’s not coming.
Other countries won’t take the me’s. There is no fleeing. So so many people are going to die.
They’re still hoping for a diagnosis, hanging on for the next doctor. It’s not coming.
Other countries won’t take the me’s. There is no fleeing. So so many people are going to die.
Celebrating a hospital losing funding because it’s in a red state is not doing what you think it is.
Research hospitals don’t just treat local residents. People with rare diseases HAVE to travel, often to different states, to find care.
We’re supposed to be on the side of intelligence. Use it.
Research hospitals don’t just treat local residents. People with rare diseases HAVE to travel, often to different states, to find care.
We’re supposed to be on the side of intelligence. Use it.
March 29, 2025 at 7:25 PM
Celebrating a hospital losing funding because it’s in a red state is not doing what you think it is.
Research hospitals don’t just treat local residents. People with rare diseases HAVE to travel, often to different states, to find care.
We’re supposed to be on the side of intelligence. Use it.
Research hospitals don’t just treat local residents. People with rare diseases HAVE to travel, often to different states, to find care.
We’re supposed to be on the side of intelligence. Use it.
I’ve been to FIVE GIs now. Five. I’ve tried explaining that I’m taking some supplements but I can’t take others.
I have secondary severe MCAS and will go in to ana and some don’t absorb even if I do take it.
All five have refused to accept this and just want me to take vitamins.
I have secondary severe MCAS and will go in to ana and some don’t absorb even if I do take it.
All five have refused to accept this and just want me to take vitamins.
March 24, 2025 at 4:06 PM
I’ve been to FIVE GIs now. Five. I’ve tried explaining that I’m taking some supplements but I can’t take others.
I have secondary severe MCAS and will go in to ana and some don’t absorb even if I do take it.
All five have refused to accept this and just want me to take vitamins.
I have secondary severe MCAS and will go in to ana and some don’t absorb even if I do take it.
All five have refused to accept this and just want me to take vitamins.
Truth
![[A rainbow]
I identify as a medical disaster](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dbzmdmsaz6lkhb4tv3culzme/bafkreicmukuzvmnqijvfbwwmdpnioxz42ufppi6albaorp6eymdbijjdr4@jpeg)
March 20, 2025 at 7:23 PM
Truth
Diagnosis? Clinically undiagnosable.
I’ve had some genetic testing, and with what I think it is from that test, doesn’t matter until I have a scientist.
So now I get full genome testing and if nothing I’m genetically undiagnosable and I’ll get kicked back to the Undiagnosed Disease Program.
I’ve had some genetic testing, and with what I think it is from that test, doesn’t matter until I have a scientist.
So now I get full genome testing and if nothing I’m genetically undiagnosable and I’ll get kicked back to the Undiagnosed Disease Program.
March 20, 2025 at 5:57 PM
Diagnosis? Clinically undiagnosable.
I’ve had some genetic testing, and with what I think it is from that test, doesn’t matter until I have a scientist.
So now I get full genome testing and if nothing I’m genetically undiagnosable and I’ll get kicked back to the Undiagnosed Disease Program.
I’ve had some genetic testing, and with what I think it is from that test, doesn’t matter until I have a scientist.
So now I get full genome testing and if nothing I’m genetically undiagnosable and I’ll get kicked back to the Undiagnosed Disease Program.
Woke up at 5 to drive 3 hours for a new doctors.
I’m not hopeful.
I’m not hopeful.
March 20, 2025 at 10:23 AM
Woke up at 5 to drive 3 hours for a new doctors.
I’m not hopeful.
I’m not hopeful.
Oh. Good. I guess we’ll just die. Thanks MAGA.
"China is among the largest suppliers of ingredients used in generic drugs, and about 90% of prescriptions filled in the U.S. are generics, research shows." www.usatoday.com/story/money/...
Trump's tariffs, trade war with China could worsen prescription drug shortages in US
Generic drugmakers and hospital pharmacists warn that added financial pressure from tariffs could strain the nation's generic drug supplies.
www.usatoday.com
March 18, 2025 at 8:16 PM
Oh. Good. I guess we’ll just die. Thanks MAGA.
Who did this? 😂😅
March 18, 2025 at 8:13 PM
Who did this? 😂😅
If this is what’s happening with pediatric brain cancer, what hope do people like me have?
It’s innocent children. Like what universe are we in?!
It’s innocent children. Like what universe are we in?!
This is horrible to post, but I may as well post it. We are essentially shutting down research operations in my group, which is focused on treatments for pediatric brain cancer. I’m a well funded investigator, and there’s no choice. Science can’t function without the stability of NIH
March 16, 2025 at 12:15 PM
If this is what’s happening with pediatric brain cancer, what hope do people like me have?
It’s innocent children. Like what universe are we in?!
It’s innocent children. Like what universe are we in?!
RFK just said riboflavin was a dangerous chemical because he can’t pronounce it.
Just a heads up-
It causes a serious deficiency. When you start slipping in to the nerve damage, confusion, and memory problems like you have dementia, remember MAGA, you couldn’t read so you did this to yourselves.
Just a heads up-
It causes a serious deficiency. When you start slipping in to the nerve damage, confusion, and memory problems like you have dementia, remember MAGA, you couldn’t read so you did this to yourselves.
March 14, 2025 at 6:35 PM
RFK just said riboflavin was a dangerous chemical because he can’t pronounce it.
Just a heads up-
It causes a serious deficiency. When you start slipping in to the nerve damage, confusion, and memory problems like you have dementia, remember MAGA, you couldn’t read so you did this to yourselves.
Just a heads up-
It causes a serious deficiency. When you start slipping in to the nerve damage, confusion, and memory problems like you have dementia, remember MAGA, you couldn’t read so you did this to yourselves.
The Undiagnosed Disease program rejected me. They want me to go to one of their hospitals and see their genetics team first. They have all the info which makes me believe they think it’s what I know it is.
The appoint is next week. This is the last hope.
The appoint is next week. This is the last hope.
March 14, 2025 at 12:00 AM
The Undiagnosed Disease program rejected me. They want me to go to one of their hospitals and see their genetics team first. They have all the info which makes me believe they think it’s what I know it is.
The appoint is next week. This is the last hope.
The appoint is next week. This is the last hope.