We know, this is late notice for a walk - however, we felt compelled to get the word out, as it's come to our attention that a walk to raise money to cure a chronic disease or at least find new treatment in the fourth largest city in our nation has raised less than half of it's fund-raising goal. How much is that goal? A million dollars? Half a million dollars? Nope, one hundred thousand dollars ($100,000), in a city of how many? There's a good reason for that, you see, lupus (Systemic Lupus Erythemetosis, SLE) is not championed by a celebrity, or a gaggle of product companies, to raise awareness. The local media won't be mentioning the importance of improving and extending the lives of the people (ninety percent of which are women) who suffer from this disease. There will only be a few hundred walkers at Houston Baptist University tomorrow morning to participate and support researching a cure, if that. SLE, which is a chronic, inflammatory autoimmune disorder, affects approximately 1.4 million women (additional specifics after the jump, below). Registration begins at 9:00 a.m. and we walk at 10:00 (bonus, you can still sleep in, a little)
We went all in for pink in October....it's time to turn to purple (the official color of SLE). No one will be baking cute cupcakes, or donating a percentage of any proceeds to aid in raising funds, so it's up to us. As individual Houstonians, we should make a donation to find a cure, or to make life better and longer, for our friends and neighbors (hopefully). It's deductible, just saying. If you and all of your friends gave $5, we could at least say that our city hit its fundraising goal. Here's some scoop on the walk itself: it's family-oriented, it's a 5k (you don't have to walk the entire walk, if you are unable to), dogs on a leash are welcome (you must pick up their waste, of course) and it doesn't start at the crack of 8:00. Further, absolutely 100% of all monies raised goes directly to fund medical research - how many other walks can boast that (we're too harried to research that, right now)?
Alliance for Lupus Research Mission: To find better treatments and ultimately prevent and cure systemic lupus erythemetosis (SLE, or lupus), a debilitating autoimmune disease.
Bang this link to make a donation to tomorrow's walk (feel free to hit a walker's team, so that they can reach their goals).
Bang this link for more information.
Follow the jump for specifics on SLE.
Lupus, latin for "wolf" is so named because many who suffer have a butterfly, or malar rash on their faces, at some point. Much like the markings on the face of a wolf.
About SLE and it's symptoms/treatments:
What affect does it have?
Lupus may affect the skin, joints, kidneys, liver, central nervous system, heart....basically any and every part of your being, it can even develop into leukemia in some instances, thus affecting bone marrow.
Common symptoms:
Symptoms vary widely from person to person, not all suffer the same. Virtually all patients suffer joint pain. Many suffer from butterfly rash, extreme fatigue, muscle aches, nausea & vomiting, seizures, skin rash, arthritis, psychosis, sensitivity to sunlight and pleurisy, or pleural effusions.
Additional associated symptoms:
Abdominal pain, blood disorders (including abnormal clotting), hair loss, nosebleeds, numbness and tingling in the extremeties, patchy skin color, difficulty swallowing, blood in urine and visual disruptions (loss of focus).
Treatment:
There is no cure or direct treatment for this disease. At best, physicians try to control symptoms using anti-inflammatories, hydroxychloroquinine (plaquenil) and varied doses of corticosteroids. When an organ system is involved (kidney failure or "malfunction" is very typical and a leading cause of death), certain anti-regection medications show promise in containing the disease. Typically, cytoxan, imuran or methotrexate is employed (chemotherapy). The treatments typically have side effects that require additional medication or cause further health problems - life with lupus is very painful for many.
SLE is essentially a disease that occurs when the body turns on itself, attacking normal, healthy tissue and cells rather than diseased or infected ones, like it's supposed to. A diagnosis cannot be done with one simple test, but, is made only after a patient presents at least four of the eleven typical characteristics. Tests used to diagnose this disease are: Antinuclear antibody panel, Anti-double strand (ds) DNA, Anti-phospholipid antibodies and Anti-smith antibodies. Clear as mud on those tests?
Survival odds are better, the ten year survival rate is now greater than 85% (yes, what we're saying is, most patients will not survive a normal life span and it's an excruciating death, in many cases). But, the odds are improving....that's a plus.
Helpful links:
The Johns-Hopkins Arthritis Center
Blogging Lupus:
Fighting Fatigue (this is a great source with a lot of links imbedded)
LupusRants: Thirty Things You May Not Know (excellent)
Think you may have lupus (because no one knows what's wrong with you and you feel like hell, so you may just be crazy)? Schedule an appointment with a rheumatologist for further discussion of your symptoms and a few (dozen) simple blood tests.
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