Why is Lupus Known as “The Cruel Mystery”?

tracy rodeBy Tracy Rode, President and CEO
Lupus Foundation of America, Mid-South Capter

The Lupus Foundation of America recently added a tag line to its logo: “Help Us Solve the Cruel Mystery.” Today, cells are analyzed down to their DNA for use in planning treatments. So why do we still talk about a disease as a mystery? How does lupus still evade scientists searching for possible treatments and cures?

Lupus is a disease that provides no simple answers. First, it can be very difficult to confirm a diagnosis of lupus. Patients – 9 out of 10 of whom are female – often first visit the doctor because they have some of these symptoms:

 

  • Extreme fatigue (tiredness)
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • Swelling (edema) in feet, legs, hands, and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun- or light-sensitivity (photosensitivity)
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • Mouth or nose ulcers

Every symptom listed above can be a symptom of several other diseases and conditions. Lupus is sometimes called “the great imitator” because of this.

In lupus, something goes wrong with your immune system, the part of the body that fights off viruses, bacteria, and germs (“foreign invaders” like the flu). Normally, our immune system produces proteins called antibodies that protect the body from foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies (auto means self and anti means against: against self) are made that damage and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

There are blood tests that can help confirm a diagnosis, but those blood tests can be positive for reasons other than lupus. Doctors use the blood tests to add more information to help them decide how to treat you, but there’s not a specific test that gives a “yes” or “no” for lupus.

There are other things that scientists do not understand about lupus: Why do women have it more frequently than men? Why does lupus tend to happen to more than one person in a family? Why are African Americans more likely to develop lupus? How can one lupus flare (episode) in a patient be so different from the previous flare?

It is true that medical science has not found cures for lupus, and some people do die from the disease. However, many people with lupus can look forward to a normal lifespan if they follow the instructions of their physician, including taking their medication(s) as prescribed, know when to seek help for unexpected side effects of a medication, stay aware for new ways their lupus may affect their bodies, and do their best to avoid stress and lead a healthy lifestyle.

lupus

Walk with us to bring awareness, September 13, 2015 at Centennial Park. Click here for more information. 

 

In Middle Tennessee, the Mid-South Chapter of the Lupus Foundation of America is here to provide education and support for those with lupus or who may be diagnosed or at risk. Over 35,000 Tennesseans suffer from lupus, and they all can benefit from services such as online and phone support, easy-to-understand educational materials, in-person support and wellness groups, and awareness activities like the Walk to End Lupus Now (coming up soon in Nashville on Sunday, 9/13).

 Please visit our web site, lupusmidsouth.org, connect with us at facebook.com/lupusmidsouth or follow us on Twitter @lupusmidsouth. We are available by phone at 615-298-2273.