The real name of HAE? “BSIS”. Bradykinin Super Influx Syndrome. HAE is hereditary angioedema, a syndrome (called a disease) containing causations. HAE is a syndrome because many condtions that are diseases and one other core syndrome cause it.
“It” is atypical edema HAE+ patients get.
The underlying foundation of HAE is BSIS. I interviewed an expert and without BSIS, bradykinin super production, HAE would be dead. BSIS is NOT being researched. Drs. think c-1 is HAEs messiah. It is not.
BSIS can override c-1 infusion at random.
If you have HAE, you will want BSIS researched. The other disease is not a disease. Congenital C-1 deficiency. Would you call me diseased if I was born without arms? I actually was born without half a pancreas, also not a disease. What causes c-1 deficiency in HAEers possibly could be cured with bone marrow transplantation. Is that researched? No.
That sucks. No BSIS research. No papers on curing endoplasmic reticulum disorders. Everyone’s c-1 is made in the cellular microcosm of the hard endoplasmic reticuli and in HAE, its not even the reticuli’s fault. C-1 is made in ME at 70% amount normal. Half of it works. Much of c-1 in HAE patients is made bent and is stillborn. So go to the mirror, friends and repeat after me:
“My c-1 is stillborn, shaped bent like a cheeto, not normal. Why is THAT not researched more?” Do we want a cure? Yeah. Are we trying? No? Do you know what happens if we are cured? Cinryze wouldn’t be needed. I’m not against Virocorp, but if we are cured, that’s a profit loss of 200 million dollars this year 2013 alone. Economics fight research efforts.
It is not common knowledge that BSIS is the real problem. But you could say, “Doesn’t c-1 fix it?”
No. It helps. Its necessary. But BSIS can override c-1 and does. Take AAE for example. My friend Soile in Finland has normal c-1. But she has AE attacks. She uses Firazyr, a non-C-1inh med for HAE. How Firazyr works is on Bradykinin Suprainflux and chemically spins the B cells off track from bradykinin production. So the war on HAE needs to be fought against BSIS.
Anyone telling you anything different is selling you something and has never felt the pain. Those who are already pulled into the HAE medicine business with the HAEA are going to have a harder time seeing that reseach for HAE has been dead for a long time. If you want to read about a sister disease outdoing us in research on a mere $1.5M grant, look at FOP. They are breaking ground on neuropathogenesis. I know, because I’ve been helping them. I gave up on HAE for a while because MDs are run by S and C and V on the East coast.
I don’t want to get death threats for speaking too loud. So you all do it. YOU ALL- do it. Say what you want. Are we going to watch pa5ients with fibrodysplacia ossifans progressiva out do us? Hahahah! Lets race for a cure. F*ck HAE. Did you know, fellow HAEers that FOP is about the most hard core disease in the world? There are 700 of them. I know about 8. We are behind them in research because they have no meds. There skeletons calcify and its bad you can imagine. My 17 year old friend just had a grand mal seizure with her FOP. Im speechless.
Why is there no research? Hahahah. I read. There’s nothing I can’t understand that the MDs say to me, I teach them and I know research was dead because I restarted it!
My name is Andy “A-bomb” Harrison. My father died in 2002 and was an HAE reseacher. My father had angst from hell and he watches me now from up above. Yes, Father. I remember my training. Father say:
“Son, do not let the bastards get
-Dr. Raymond Eugene Giesbrecht
So I will research-kick this syndromes ass until there are ass prints on the vaulted ceiling, I will destroy ignorance, seek the abused patient and oppose with great prejudice any MD who thinks MORE about retirement than his HAE patient…