Living with Lupus

  • Sat Jun 1st 2013

It’s one of those scary diseases you may have heard of, but have no idea what it is. Since the 1950's the chances of living with Lupus disease for more than 5 years has increased dramatically. And that's good news. But health experts say it's still a struggle for those who have it.

Caroline Gort, Lupus patient: “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.”

When Caroline Gort was diagnosed with Lupus more than a decade ago at the age of 30, she remembers struggling with the word incurable.

Caroline Gort, Lupus patient: “Our brains are hardwired to assume, if we get sick we get better.”

No two cases of Lupus are the same.

Any tissue or organ of the body can be affected; skin, heart, brain, kidneys.

Caroline 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.

Vaidehi Chowdhary, M.D. Mayo Clinic Rheumatology: “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.”

Mayo Clinic Rheumatologist Vai 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.

Vaidehi Chowdhary, M.D., Mayo Clinic Rheumatology: “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.”

The wide variety of symptoms often leaves patients without an accurate diagnosis for years.

Caroline 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.

Dr. Chowdhary urges anyone with persistent symptoms to see a rheumatologist because Lupus may lead to other conditions, like heart disease.

Vaidehi Chowdhary, M.D., Mayo Clinic Rheumatology: “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.”

Caroline’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.

Caroline Gort, Lupus patient: “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.”

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