I’ve been talking to a lot of people recently, many with lupus, and a similar story seems to emerge. We are on medication and we don’t necessarily feel that much better than we did before we started taking it.
Why is this? Maybe because there hasn’t been a new drug produced specifically to treat lupus in nearly 4o years.
I wonder if instead of having cancer, Tony Snow or Ted Kennedy, or any other popular politico, had lupus (not that I wish illness on anybody), if we would see an increase in research funding.
On the other hand, I found out that Barbara Bush has lupus and clearly that has made a big difference in the cause (as in it hasn’t).*
So what do we do about it?
How many more have to die from a disease that they shouldn’t die from?
* This isn’t meant to be a political piece in terms of which side of the political divide I fall on. This is a commentary on the lack of research funding and just so happens to involve (sort of) the current administration…
Think about how much you knew about Lupus before your diagnosis. I didn't know anything about it. I have to remind myself of that. The rest of the population still lives in that ignorance. It will be a difficult task to educate them. Lupus is just not a widely discussed disease. You say the word cancer and everyone gasps but you say lupus and they just stare at you and say "what's that??". I'm getting tired of explaining it to others. And, even after I tell them what it is they still just sit there and say "oh". That's it. Not sorry you have that or hope you get better...just "oh". It's like I just told them some made up story. It is very frustrating. But, my point is the lack of funding will continue because the lack of education continues. People only donate to the causes they know about.
ReplyDeleteSolaroil,
ReplyDeleteYou're point is well taken, as I think we all know how difficult it is to try and attempt to educate those around us about lupus, let alone the world at large. It is still quite frustrating, though...
Leslie
hi!
ReplyDeletethere was a time when the culture was just as ignorant about cancer, and the bubonic plague, even AIDs. Every disease seems to require this public awareness and education campaign, but it seem to be random as to which disease gets the most sympathy and attention.
I will say this- i find the public in general less sympathetic to chronic illnesses in general because it is a never-ending need, as opposed to something that's more like a chapter in one's life that has a definite beginning and ending, something you can recover from.
secondly, cancer is a big big industry. the drug companies make a lot of money off it. everyone makes a lot of money off it. once they figure out how to make a lot of money off lupus, i'm sure you'll see more benefits. in fact, there are already "galas" popping up all over, including "lupus LA" where stars dress up and pose on the red carpet on the way in.
so, while i too have lamented the lack of celebrities admitting to having lupus, i totally understand why they would not admit it- it would make them unemployable. films could not get insurance, production could be halted by the actor getting sick., etc.
i look to alternative medicine for help, even though i am currently on 5 prescriptions to control lupus. i find if i actually want to feel better, as opposed to just not dying from kidney failure, i have to change my diet, detox, get acupuncture, carefully exercise, drink clean water, etc. And of course big pharma is not going to fund research on anything other than stuff that will sell drugs...
drugs have saved my life 3 times now, but if i were to stay on them for life, i'd have many other problems. beware those that tell you drugs are the only answer and that we have no personal power over our own well-being!