Anyone else sometimes feel like they're keeping us sick?

I understand, feel free to vent and get it all out. I don't know if it is done w/ malicious intent... but our society rewards the pharm companies w/ $ by always treating the symptoms and never getting to the root of the cause. The pharm. mantra seems to be "a customer cured, is a customer lost" I like to think though that there are some researchers/doctors out there that are trying to get to the bottom of this. This being said,I have been hard pressed to come up w/ anything they have cured in the last 50 years short of sickle cell anemia. I guess I am somewhat jaded too:)

I think we have all had these bad days, I hope you will find a way to feel better soon. Feeling sick is enough to get anyone down. Hugs.
B

I remember feeling that frustration. Just one more reason I had surgery. I was so fed up with those horrible drugs that didn't help me anyway. Many of the doctors I had just were not sympathetic. Unless you live with this awful disease, nobody knows what it's like. Hope things get better for you soon.

As a researcher in the field, I'm actually kind of offended. Granted I'm in academia, and on the basic sciences side rather than production/pharmacy, but still...

There is a cure. It's surgery.

There is no SIMPLE 'cure' because the disease is not something simple. There is no 'well, if I just do this, the bad things will go away and I will never be sick again.' To cure UC, you would need to re-educate and re-tolerize the entire immune system. We simply have not figured out how to do that yet. In addition, the number of cell types and genes involved are astounding, and we still do not know everything about how they work. It's not like a viral disease where you can simply remove the insult and BAM, you're better.

Also, UC is expensive. To society. In science we use a term called 'disability-adjusted life years' or DALYs to describe productive years lost due to either morbidity (disability) or mortality (death) by a disease. These units have real economic cost to a country. In fact, they're the reason the scientific community is so eager for a vaccine for dengue or malaria. Considering the number of people with IBD on disability and the direct medical care costs, it would be more financially lucrative to creat a cure than keep treating. Also, the research costs money to do. Each new drug or vaccine is millions of dollars of R&D.

Also, diseases they've 'cured' in the past 50 years? What about vaccines? Hepatitis B (and lots of hepatocellular carcinomas along with that), chicken pox/shingles, meningitis, etc. We are SO close to vaccines
for dengue and malaria. Not to mention the advances that have happened in cancer and neurological research.

If you think it's so easy to 'cure' a chronic immune system dysfunction, though, you're more than welcome to take a shot at it.

suebear said...
Excellent Heather, thanks for the education.

Sue

Thank you for making me laugh. Needed it.


WingZero, I feel the same way. Thankfully you are not alone on this.

Surgery is a "cure" as much as beheading is a cure for headache. I can think of no other disease where the "cure" is to remove a vital body part and call it done.
C'mon!

Malkavian said...
As a researcher in the field, I'm actually kind of offended. Granted I'm in academia, and on the basic sciences side rather than production/pharmacy, but still...

There is a cure. It's surgery.

There is no SIMPLE 'cure' because the disease is not something simple. There is no 'well, if I just do this, the bad things will go away and I will never be sick again.' To cure UC, you would need to re-educate and re-tolerize the entire immune system. We simply have not figured out how to do that yet. In addition, the number of cell types and genes involved are astounding, and we still do not know everything about how they work. It's not like a viral disease where you can simply remove the insult and BAM, you're better.

Also, UC is expensive. To society. In science we use a term called 'disability-adjusted life years' or DALYs to describe productive years lost due to either morbidity (disability) or mortality (death) by a disease. These units have real economic cost to a country. In fact, they're the reason the scientific community is so eager for a vaccine for dengue or malaria. Considering the number of people with IBD on disability and the direct medical care costs, it would be more financially lucrative to creat a cure than keep treating. Also, the research costs money to do. Each new drug or vaccine is millions of dollars of R&D.

Also, diseases they've 'cured' in the past 50 years? What about vaccines? Hepatitis B (and lots of hepatocellular carcinomas along with that), chicken pox/shingles, meningitis, etc. We are SO close to vaccines
for dengue and malaria. Not to mention the advances that have happened in cancer and neurological research.

If you think it's so easy to 'cure' a chronic immune system dysfunction, though, you're more than welcome to take a shot at it.

Surgery? Surgery to take a chance to make it worse? I mean I know what your saying. We don't expect a cure. I mean that would be a miracle! However all we are saying as long as it's been around you would think there might be a medicine available just for IBD. I mean I'm 18. I have to deal with this for the rest of my life. We want a cure so we don't have to hold our stomachs everytime a flare up is happening, or after we our colon is giving us trouble we don't have to run to the toilets ever 2 minutes. I mean we do respect your line of work. However you should respect our pain as well. I know it could be worse. However I wonder why I have to deal with this every day. I just want to get better I don't think that is to much to ask for. I greatly appreciate your opinion, but you have to understand were we come from as well.

Xlife, you speak as if your pain differs from mine. I'm a patient as well. I started having symptoms at 19 and was diagnosed at 21. I was on azathioprine at age 22 because my case was resistant to prednisone. In fact, being both a patient and a researcher gives me a rather unique perspective. Everyone wants to get better, but just wanting something doesn't make it happen and immunology is a highly complex topic. And as I said, if you think it's so easy, you're more than welcome here on the front lines.

pb4-So what are 5-ASAs? I don't see them used for any other ailments. The rest are medications used to alter immune function. Would you like separate painkillers for headaches, earaches and joint pain as well?

By definition, surgery is a cure for UC. It may not be a pleasant one, but its a permanent fix. I suppose we shouldn't cure gallstones by operating either, then.