Lupus (ER)

“And
so you say it burns and then it blisters up and then the blisters
peel off?” Dr. David Goo asks fifteen-year-old Taniel. She
suffers from lupus and today she’s having a flare up.

“She was having these very painful large blisters on her
hands and the soles of her feet to the point where she was having
difficulty walking and using her hands,” the doctor explains.

Her doctor has been giving her steroid pills, prednisone, to
prevent these flare-ups, but the potential side effects are serious-
weight gain, high blood pressure, and glaucoma, just to name a
few.

As Dr. Goo explains, “It’s a very tight balance,
a tight rope, that doctors have to walk between giving too much
steroids and having side effects from the steroids, and giving
enough steroids to decrease the complications, the inflammation
secondary to lupus.”

One way to reduce risk and speed up healing, he says, is to use
a steroid cream instead of pills. “And you’ll put it
on your hand and put this over it and then leave it on for an hour
or so,” the doctor shows Taniel.

“One of the ways we can apply that to make it more effective
is to put it on the hands and then cover the hands with some type
of occlusive dressing or something that’s gonna keep the
moisture in,” he says.

“And then you know that we’re gonna double your prednisone.
You’re currently on 20 milligrams a day and we’ll go
up to 40 milligrams,” he explains.

Taniel’s blisters and pain should start to go away in the
next few days, but unfortunately, the lupus is permanent. Today
at least, there is no cure.

“The younger you are diagnosed with it,” explains Goo, “probably
the more severe your long-term prognosis is gonna be and the more
severe your complications are gonna be.”

Most Americans have heard of lupus, but many are not aware of exactly what
the disease is. Experts from the Lupus Foundation of America, Inc. (LFA)
have studied lupus awareness. Consider the following:

• In a nationwide poll of 1,000 adults, 38 percent said they are
  somewhat or very familiar with lupus, while 39 percent have only
  heard of the name of the disease and 22 percent have never heard
  of lupus.
• In an another survey, only four of 10 young adults ages 18 to
  24 claimed to be aware of lupus, even though the disease often
  strikes during the childbearing years.
• While 65 percent of respondents to this survey claimed awareness
  of lupus, only 20 percent could offer accurate basic information
  about the disease.

In addition, consider the following regarding cases of Lupus in
America gathered by the LFA:

• Approximately 1.5 million Americans have a form of lupus.
• Although lupus can strike men and women of all ages, 90 percent
  of individuals diagnosed with the disease are women, and 80 percent
  of those afflicted with systemic lupus develop it between the ages
  of 15 and 45.
• Approximately 70 percent of lupus cases are systemic. In about
  50 percent of these cases, a major organ will be affected.
• Discoid lupus accounts for approximately 10 percent of all cases.
• In approximately 10 percent of all lupus cases, individuals
  will have symptoms and signs of more than one connective tissue
  disease, including lupus. A physician may use the term “overlap
  syndrome” or “mixed connective tissue disease” to
  describe the illness.
• Twenty percent of people with lupus will have a close relative
  (parent or sibling) who already has lupus or may develop lupus.
• About 5 percent of the children born to individuals with lupus
  will develop the illness.
• Lupus is two to three times more prevalent among people of color,
  including African-Americans, Hispanics, Asians and Native Americans.
• It is difficult to determine the annual number of new lupus
  cases, or the number of individuals who die from health complications
  of the disease. However, the idea that lupus is generally a fatal
  disease is one of the gravest misconceptions about the illness.
• While some people do die from lupus, most people with the disease
  will go on to live a normal life span. The U.S. Centers for Disease
  Control and Prevention issued a recent report that indicated that
  deaths attributed to lupus increased over a 20-year period, particularly
  among African-American women ages 45 to 64. However, it is not
  clear if the rise is the result of an actual increase in lupus
  mortality or better identification and reporting of deaths due
  to complications of the disease.

The LFA defines lupus as a “chronic autoimmune
disease in which the immune system, for unknown reasons, becomes hyperactive
and attacks normal tissue. This attack results in inflammation and brings
about symptoms,” which can include the following:

• Achy or swollen joints
• Persistent fever over 100 degrees
• Prolonged, extreme fatigue
• Skin rashes, including a butterfly shaped rash across the cheeks
  and nose
• Pain in the chest or deep breathing
• Anemia
• Excessive protein in the urine
• Sensitivity to sun or ultraviolet light
• Hair loss
• Abnormal blood-clotting problems
• Fingers turning white and/or blue in the cold
• Seizures
• Mouth or nose ulcers lasting longer than two weeks

Lupus is not a form of cancer, and it is not contagious. And while
80 to 90 percent of patients don’t die from lupus, it is a
very serious disease and can become fatal if left untreated or improperly
diagnosed. If you suspect your child may have lupus, the first step
is to get a professional opinion. If a doctor says your child does
indeed have lupus, it is important for you to gather all the information
you can concerning the disease and its symptoms and treatments. In
addition, it is important that friends, family, educators, coaches,
etc. be made aware of the disease and the fact that your child has
it.

The majority of children with lupus will do very well. Treatments will
depend on the severity of the disease in your child, and can range
from mild to aggressive. Also, treatments may vary throughout the recovery
process depending on how the lupus affects your child and if it gets
worse. Again, these are all questions and concerns to bring before
your health-care provider.