It was a really short rabbit hole
So I read this thing and went down a really short rabbit hole: If you have first-hand knowledge of the FDA’s torpor, get in touch
It's heartwrenching and I feel for the guy. This is the kind of thing I used to see in the CF community.
It's CRAZY MAKING when you are literally dying and get told "We can't let you take this drug because there might be side effects a few years down the road." People be like "LET ME LIVE LONG ENOUGH TO WORRY ABOUT THAT, MMMKAY ASSHOLE!!!!!"
But I'm not here to criticize the FDA.
He is dying of squamous cell carcinoma. That's a skin cancer and skin cancer is not normally that deadly. It's usually one of the more survivable cancers.
If you look up causes for squamous cell carcinoma, risk factors include: Fair skin, excessive sun exposure, use of tanning beds, history of sunburn. So I wondered if it might be associated with a microbe that loves sunlight.
Some cancers, like cervical cancer, are known to be caused by infection. I happen to know of a disease that loves sunlight -- chicken pox -- and once you are infected it STAYS in the system permanently and causes shingles in some people in old age.
And chicken pox and shingles are both primarily diseases of the skin.
When my kids had chicken pox, I discovered my youngest had it because we were at the pool and I noticed he had a few spots and I was like "Out of the pool. We are going home." and I called my sister and asked her to look up all the spotty diseases in her medical encyclopedia and read them off to me, so I figured out he had chicken pox with six spots and a fever.
Those first six spots grew to an ENORMOUS size, much larger than any others he had, something like four to six times the size of any of the largest that came after that and also left scars in a way the others did not. Sunlight can have a dramatic impact on varicella-zoster, the virus that causes chicken pox.
And there are KNOWN cases of varicella associated with squamous cell carcinoma. In fact it is described as "highly aggressive" (don't look at the pics -- ewwww): High Aggressive Herpetiform Squamous Cell Carcinoma
Maybe someday they will find a firmer connection and figure out how to treat the viral infection which may be causing the cancer, though probably not in time to save this guy.
It's heartwrenching and I feel for the guy. This is the kind of thing I used to see in the CF community.
It's CRAZY MAKING when you are literally dying and get told "We can't let you take this drug because there might be side effects a few years down the road." People be like "LET ME LIVE LONG ENOUGH TO WORRY ABOUT THAT, MMMKAY ASSHOLE!!!!!"
But I'm not here to criticize the FDA.
He is dying of squamous cell carcinoma. That's a skin cancer and skin cancer is not normally that deadly. It's usually one of the more survivable cancers.
If you look up causes for squamous cell carcinoma, risk factors include: Fair skin, excessive sun exposure, use of tanning beds, history of sunburn. So I wondered if it might be associated with a microbe that loves sunlight.
Some cancers, like cervical cancer, are known to be caused by infection. I happen to know of a disease that loves sunlight -- chicken pox -- and once you are infected it STAYS in the system permanently and causes shingles in some people in old age.
And chicken pox and shingles are both primarily diseases of the skin.
When my kids had chicken pox, I discovered my youngest had it because we were at the pool and I noticed he had a few spots and I was like "Out of the pool. We are going home." and I called my sister and asked her to look up all the spotty diseases in her medical encyclopedia and read them off to me, so I figured out he had chicken pox with six spots and a fever.
Those first six spots grew to an ENORMOUS size, much larger than any others he had, something like four to six times the size of any of the largest that came after that and also left scars in a way the others did not. Sunlight can have a dramatic impact on varicella-zoster, the virus that causes chicken pox.
And there are KNOWN cases of varicella associated with squamous cell carcinoma. In fact it is described as "highly aggressive" (don't look at the pics -- ewwww): High Aggressive Herpetiform Squamous Cell Carcinoma
Maybe someday they will find a firmer connection and figure out how to treat the viral infection which may be causing the cancer, though probably not in time to save this guy.
