This is an interesting article on lupus with many links to other informative articles and data. I will have to make one correction though. It is widely accepted within the lupus community that there are more than 1.5 million lupus patients in the United States. Some experts believe the number is more like 2.5 million (1 in 170 people) and they say 5 million world wide diagnosed. Because people of color have 3 times the prevalence (Blacks, Native Americans, Asians, Hispanics) and 90% of lupus patients are women; it is likely not all are being diagnosed, treated or included in research studies. Remember a few years back it was discovered that many breast cancer studies were being performed on men? Same goes for past lupus studies. Maybe because men are more likely to take the risk of being study participants or that most researchers in the past were men. Not sure. I do know that ACCURATE numbers are not truly known. The other reason people do not get diagnosed is because it is such a difficult disease to pin down. Some people have told me they had symptoms for 10-20 years before they found out that what they were experiencing was lupus. Almost all lupus patients have arthritis so it can be misdiagnosed as Arthritis alone.The flares can come and go and lab tests can be off especially if it take 6 months to see a specialist. The flare could be gone and lupus in an inactive state by the time a patient is tested. Then there is the fear of losing insurance. Some people with lupus will not allow Dr.'s to test them because they do not want to lose their jobs or insurance. It happened to me years ago so I can understand cause for alarm.Loss of income is a huge factor as well. Who wants to hire someone who will be on and off sick indefinitely? Thank goodness for Americans with Disabilities Act!
In order to make it OK for all lupus patients to be diagnosed and treated we need more public awareness and PR like the ingenious Susan G. komen campaign http://ww5.komen.org/(you see the pink ribbon everywhere and many movie stars and musicians supporting the cause) and more funds to research the disease. Chronic disease, which includes Systemic Lupus, are the leading causes of disability and death in the US as most lupus patients have arthritis, heart involvement, increased obesity levels mainly due to steroid treatments and kidney disease. Bottom line for me is that we need to make aware the seriousness of lupus and the prevalence of the disease in order to save lives.
According to the CDC:
Chronic Diseases are the Leading Causes of Death and Disability in the U.S.
- 7 out of 10 deaths among Americans each year are from chronic diseases. Heart disease, cancer and stroke account for more than 50% of all deaths each year.1
- In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.2
- Obesity has become a major health concern. 1 in every 3 adults is obese3 and almost 1 in 5 youth between the ages of 6 and 19 is obese (BMI ≥ 95th percentile of the CDC growth chart).4
- About one-fourth of people with chronic conditions have one or more daily activity limitations.5
- Arthritis is the most common cause of disability, with nearly 19 million Americans reporting activity limitations.6
- Diabetes continues to be the leading cause of kidney failure, nontraumatic lower-extremity amputations, and blindness among adults, aged 20-74.7
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