People are trying my drug without being in the trial.

There's nothing that I can do about this. People can do what they want to do. What is nice is that they are sending me a "diary" of sorts, about their experience with this compound.

So far, it is working. In cystic fibrosis, you lose the ability, in the pancreas, to secrete enzymes that digest fat. One patient (the first one, so far, who has tried the compound) has gone from using at least 30 pancreatic enzymes capsules per day, to using only four. And, he gained weight doing this, which is very unusual. What is very strange is that he was taking mucolytics; at least twice a day (these patients have very thick, and sticky mucus, as part of the pathology of the disease), and now he's not taking them at all. And he reports that he is breathing easier. (This is a subjective measure, but these patients are very aware of this capacity early on, and very good subjective measures of this indice.) Then, there's the thing with the bacteria in this patient's lungs--he was culturing pseudomonas aeruginosa and it seems like that MIGHT have been eradicated since he began taking this compound. We are waiting for the sputum culture now.

Now, another patient is starting on this compound; all on their own. He is sending our foundation a diary, too, of his experience with it.

You know, when I was studying this disease, I was very sure of myself, and where I had been brought to. And, intellectually, I know that I am sure of my work, because I've checked about a million times. But this is SO stressful; this waiting. And, somehow, SOMEHOW, it is more frightening to me if this whole thing works, because I am used to studying, and if it works, I will be faced with a whole new set of challenges.

If I'm wrong, I get to go back to studying, which is comfortable for me. If I'm right, I don't know what the future holds. It is frightening to me, this unknown.

I know that all of you will say congratulations, and all that stuff, but that's not why I'm writing to you. I am writing to you because I have a choice, and I want some input. The great thing about DU is that we have some great minds here. I want to use that resource in my life; I respect it.

I can begin on another disease. And kind of let go of the rest of this process, if I am right in terms of hy work on this disease. I can dig down into studying, again. Another disease; a comfortable existence. Or, I can follow this out. Into the boring, rotten to the core, realm of pharmaceuticals.

But, it's my work. I feel responsible for it. And proprietary towards it, as well. But, I hate that part of this endeavor, and feel comfortable just starting again, on something else. I am torn.

What would you do?

DON'T MOVE!

;)

with the pharmaceuticals? That could be a compromise -- let someone else "raise the baby" for awhile so to speak? Someone you trust?

I would follow this through as far as possible. I'm kind of paranoid that way; I feel like if I'm involved in something, I'm the best person to be handling all the decisions and tasks. :)

It's your work, I would think you would be best able to handle questions/concerns/setbacks/etc. that may arise.

If you were to shift focus to a different disease, do you know which you would want to tackle? You could start taking little steps in that direction, and let the passion determine your direction.

On edit: If I recall correctly, you started from a fairly divergent point than the norm in this field of research. Successful trial results will bolster your case, but how much of a fight will you have to win over other researchers who have reputations and grants at risk for your drug to become widely accepted? Are you the best person for that potential fight? If there are others in your foundation who can wage those battles, your stepping aside might actually be beneficial(?) Not being the glory-seeker.

Making sure the drug works, and making it as widely available are the things that matter to you. You can better assess the others in your foundation than I can.
:end edit




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oh, by the way

C O N G R A T U L A T I O N S ! ! ! :)

You are an amazing person! :hi: