Let me tell you about: Lupus
This video is a rather dorky comedy/informative aid, in some ways so dopey it verges on offensive, but we have to take some humor with our tragedies or we may as well be dead already.
If you want to skip the really dumb humor part (with the apparently now obligatory HOUSE joke), you can watch the text introduction and then jump to 3:36, when the battle scene begins (answering the question, "But how does Lupus work?" I found that part amusing.
This post is meant to be informative, not a series of complaints. 1.5 million people in the US alone have Lupus, which is more than many other better-known diseases combined, including Crohn's disease and multiple sclerosis. 90% of those people are women, most of whom are non-European descent (personally, my family is from Russia, Germany and France).
To put that number in perspective: The entirety of King County in 2000 was 1.7 million (now it's guessed to be 1.9).
I've dealt with the following symptoms this year:
- Joint pain (difficult but so far not crippling)
- Extreme fatigue (sometimes crippling)
- Lung/pluera inflammation that can make it hard to breathe
- Antiphospholipid antibody syndrome (APS) which causes the blot clots that I nearly lost my leg to (instead my toe just had a little 'trim')
- Possibly some Neuropsychiatric manifestations (but these are hard to diagnose at this point or differentiate from Bipolar or medication side effects), including severe vertigo, cognitive dysfunction, mood disorder, and some mild auditory hallucinations in the form of instrumental classical, jazz or swing bands (at least my psychosis has taste).
- Increased symptoms when sick. So if you have the flu, please stay away! ;P
There aren't really 'stages' of Lupus. Generally, it is believed that the first five years of onset are the worst, that the majority of possibly symptoms will present themselves at that time. In other words, if you don't get symptom A or B during the first five years, your likelihood of getting them drops tremendously. Which is nice, and I hope that's true, since I am within that timespan.
There isn't a cure for Lupus, but there are some decent treatments that are helping many patients. And of course, since it's so individualized, some peoples' lives are unaffected by their disease. Plus, it comes and goes. I seem to be getting a lot better - I feel better than I have for a long time, physically and emotionally. Hopefully it stays that way, but it could just as easily flare up in the same old, or new, ways.
The thing that's scary to me is how far-reaching Lupus is, all the potential things it can cause, as well as how much more likely getting other autoimmune diseases are now that I have one. I could develop relatively 'small' things, like chronic headaches, skin rashes/lesions, or fevers; or I might start having seizures, or develop Choreia/Chorea (an abnormal involuntary movement disorder).
So there you go - if you want more info, or have the urge to help out, go to the Lupus Foundation's website at http://www.Lupus.org
If you want to skip the really dumb humor part (with the apparently now obligatory HOUSE joke), you can watch the text introduction and then jump to 3:36, when the battle scene begins (answering the question, "But how does Lupus work?" I found that part amusing.
This post is meant to be informative, not a series of complaints. 1.5 million people in the US alone have Lupus, which is more than many other better-known diseases combined, including Crohn's disease and multiple sclerosis. 90% of those people are women, most of whom are non-European descent (personally, my family is from Russia, Germany and France).
To put that number in perspective: The entirety of King County in 2000 was 1.7 million (now it's guessed to be 1.9).
I've dealt with the following symptoms this year:
- Joint pain (difficult but so far not crippling)
- Extreme fatigue (sometimes crippling)
- Lung/pluera inflammation that can make it hard to breathe
- Antiphospholipid antibody syndrome (APS) which causes the blot clots that I nearly lost my leg to (instead my toe just had a little 'trim')
- Possibly some Neuropsychiatric manifestations (but these are hard to diagnose at this point or differentiate from Bipolar or medication side effects), including severe vertigo, cognitive dysfunction, mood disorder, and some mild auditory hallucinations in the form of instrumental classical, jazz or swing bands (at least my psychosis has taste).
- Increased symptoms when sick. So if you have the flu, please stay away! ;P
There aren't really 'stages' of Lupus. Generally, it is believed that the first five years of onset are the worst, that the majority of possibly symptoms will present themselves at that time. In other words, if you don't get symptom A or B during the first five years, your likelihood of getting them drops tremendously. Which is nice, and I hope that's true, since I am within that timespan.
There isn't a cure for Lupus, but there are some decent treatments that are helping many patients. And of course, since it's so individualized, some peoples' lives are unaffected by their disease. Plus, it comes and goes. I seem to be getting a lot better - I feel better than I have for a long time, physically and emotionally. Hopefully it stays that way, but it could just as easily flare up in the same old, or new, ways.
The thing that's scary to me is how far-reaching Lupus is, all the potential things it can cause, as well as how much more likely getting other autoimmune diseases are now that I have one. I could develop relatively 'small' things, like chronic headaches, skin rashes/lesions, or fevers; or I might start having seizures, or develop Choreia/Chorea (an abnormal involuntary movement disorder).
So there you go - if you want more info, or have the urge to help out, go to the Lupus Foundation's website at http://www.Lupus.org