Since the 1950s the chances of living with Lupus for more than 5 years has increased from 50% to 95%, but it's still a struggle for the estimated 1 ½ million Americans who have it.
"I always say that even on my good days, most people would have called in sick if they felt the way I feel on good days," explained Lupus patient Caroline Gort.
When Gort was diagnosed with Lupus more than a decade ago at the age of 30, she remembers struggling with the word incurable.
"Our brains are hardwired to assume, if we get sick we get better," said Gort.
No two cases of Lupus are the same. Any tissue or organ of the body can be affected; skin, heart, brain, kidneys. Gort says, for her, life is a daily battle with extreme exhaustion and severe joint pain, all because her misguided inner defense system is attacking her own cells.
"So the job of our immune system is to fight bugs or cancers and, in lupus, the immune system cannot distinguish the self-tissues from infections or bugs or other things,"explained Vaidehi Chowdhary, M.D., Mayo Clinic Rheumatology
Chowdhary says the cause is unknown, but seems to involve a combination of genetics and the environment. And women are nine times more likely to develop lupus than men.
"Hormones, female hormones can also increase the risk. In fact, a lot of people recall having their Lupus start after pregnancy or conditions that have increased hormonal status," said Chowdhary.
The wide variety of symptoms often leaves patients without an accurate diagnosis for years. Gort says her reddened cheeks and sensitivity to sunlight are common among her friends with Lupus. So too are skin rashes, achy joints, anemia or low white blood cell counts, fevers and headaches.
Chowdhary urges anyone with persistent symptoms to see a rheumatologist because Lupus may lead to other conditions, like heart disease.
"In fact, women in the 30 to 45 age group are at 50 times increased risk of having a heart attack, compared to women of the similar age group," said Chowdhary.
Gort's hope lies in research, knowing that the next breakthrough might be the one to free her from the anti-inflammatory steroids most patients depend on.
"It's wonderful that the medication allows you to function and keeps you alive, but mood swings and insomnia and weight gain and severe hunger are significant side-effects that are hard to live with," she said.
The first new drug in 50 years for the treatment of Lupus was approved by the FDA in 2011. And yet another drug may be on the horizon.
Chowdhary says the recent discovery that Lupus patients have more of a specific protein in their blood has lead to Phase Two clinical trials on a way to block that protein.
For more information on Lupus, you can go to the mayo clinic's website at mayoclinic.org or you can call the Mayo Clinic in Jacksonville . That number is 904-953-2272.
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