JenOfAllTrades

I went to X and thought I’d have a little fun.

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.

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 are a lot of patients that present close to me, it’s just not what I have.

IE- I have mast cell activation but it’s not mast cell activation syndrome or mastocytosis.
My lungs don’t properly clear carbon dioxide, but I don’t have a lung disease.
Among other things like that.

I haven’t heard of this resource so anything new is good and helpful! Thank you! The closest thing to me is a family in Italy with a similar mutation.

I’m a real difficult patient. 😅 It looks like it could be a lot of things but it is none of those things.

I’ve had almost 500 blood tests. I haven’t counted since Feb and I’ve had tons done since then. Bone marrow biopsy, lung, skin,digestive biopsies, spinal tap, numerous CTs, MRIs, X-rays, PET scans.I’ve been to three teaching hospitals, multiple other hospitals. There’s findings but no one knows WHY

I’ve actually written my own research paper in to the mutation. I’ve spoken to scientist in Finland and Germany who agree that it’s most likely what’s wrong.(it’s what’s wrong.)

The problem is the US climate about scientists and super rare diseases.

I’ve been VERY on top of my medical stuff.

Just learned about the biohacker space.

I guess I CAN do this myself.

I need a machine that costs 6000 at its lowest, a centrifuge. It’s pricey. The tests themselves are 250 each. They EXIST, just no one to run them.

My doctor literally said- I’m not going to tell you not to do it. Cause he KNOWS it’s the genetic change. Literally stuck. It’s crazy

Structural modeling + labs suggest disrupted TIE2 signaling, barrier failure, and inflammation. Skin biopsy, PFTs, bone marrow, testing, symptoms all support the hypothesis.

They did. They said I could reapply but I just dont think studying something that only affects like 2 people in the world is important enough. Ill still try just dont know at this point.

🔬 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

The tests I need ran EXIST. I can even buy them. But no hospital runs them, only scientific labratories.

So I need the scientist or I have to buy a lab equipment and run them myself.

The next step was the NIH but that’s no longer possible. I either have to find a scientist, or, do experiments myself.

Yeah, we talked about doing it myself. CRAZY.

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.

100% agree!

Love this song!!

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.

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.

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.

I really love this program. 🥹

a close up of a man 's face with a beard making a funny face . ALT: a close up of a man 's face with a beard making a funny face .

👀 Me with a riboflavin deficiency.

He’s ruining patients lives. We NEED the NIH. They don’t want us alive.

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.

OUCH. My foot has sympathy pains just thinking about that. 😫 Hopefully that wears off quicker than a week.

While everyone is busy with Musk no one’s watching what’s going on in Israel, Iran, and with Taiwan.

That, in fact, did not go well. 😅 First time a doctor ever yelled at me. She didn’t listen in the slightest. Tried explaining the situation and she didn’t believe a damn thing and kept talking to me like I was the idiot.

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.