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Woman recalls yearslong journey to lupus diagnosis: 'I couldn't move, I couldn't walk'

Here’s what experts would like you to know about this chronic condition — and the rashes that can accompany it.
/ Source: TODAY

When Maria Hernandez was 21 years old, she felt a pain in her finger and assumed it would go away. She remembers thinking she'd just bumped it or it was caused by stress, but within a couple of days, the pain had progressed to her shoulder, and it "was so excruciating (that) I couldn't even lift my hands," she recalled to TODAY.

Hernandez, newly married at the time and trying to make it as an actor in New York City, was hospitalized for a month in 2011 while doctors tried to diagnose her. What they didn't realize initially was that lupus — an autoimmune disease that causes pain and inflammation in different parts of the body, according to the Lupus Foundation of America — had been attacking her joints.

"I couldn't move, I couldn't walk without the pain," Hernandez told TODAY co-host Dylan Dreyer in an interview aired Wednesday. "Then I started getting the rashes. When the doctor said, 'Maria, sorry to tell you, but you have lupus,' (and) that there was no cure, I felt like my life ended right there."

With autoimmune diseases, “your immune system gets confused and starts attacking your own tissues as if they were foreign," Dr. Allison Arthur, a dermatologist and dermopathologist at Sand Lake Dermatology Center in Orlando, Florid.

Lupus can affect your skin, kidneys, heart, joints and lungs. Some 90% of the 1.5 million people living with the condition in the U.S. are women, and it's more likely to affect people with a family history of autoimmune diseases, and people of African, Asian or Hispanic descent, as well as Native Americans and Pacific Islanders. The symptoms are different for everyone.

For example, four years before her diagnosis, Hernandez was hospitalized so she could get a kidney biopsy because she hadn't been feeling well. After the diagnosis, "I was very swollen. I gained a lot of weight. I started losing my hair, as well, so I said, OK, I guess the arts is over for me."

Symptoms of lupus

Approximately 66% of people with lupus develop some form of skin disease, according to the Lupus Foundation of America. A red butterfly-shaped rash that appears on the nose and cheeks is one common sign of lupus. Symptoms of lupus can come and go, and they vary depending on the type of lupus you have.

Types of lupus include:

  • Systemic lupus erythematous (SLE) affects many organs and typically affects women aged 15 to 45.
  • Cutaneous lupus affects the skin, causing rashes and sores on areas of the body that typically get exposed to the sun, like the face, neck, ears, arms and legs. It's common in women 20 to 50.
  • Drug-induced lupus is caused by medication and affects men more than women.
  • Neonatal lupus can appear in babies born to mothers who have lupus. It usually clears up in six to eight months.

According to the American Academy of Dermatology, rashes from lupus can look like:

  • A large rash on the back
  • A thick, scaly rash on the face sometimes shaped like a butterfly
  • Sores that appear in the nose or mouth
  • A rash that looks like a sunburn

The Lupus Foundation of America says you may notice additional symptoms, such as:

  • Fatigue
  • Joint pain or swelling
  • Swollen hands, feet or eyes
  • Headaches
  • Fever
  • Sun or light sensitivity
  • Chest pain when you take a deep breath

Discoid lupus, a type of cutaneous lupus, can cause loss of pigment. “This can be more pronounced in patients with darker skin,” said Dr. Laura Ferris, professor and director of clinical trials University of Pittsburgh Medical Center's dermatology department. The depigmentation can become permanent.

A red butterfly-shaped rash that appears on the nose and cheeks is one common sign of lupus.
A red butterfly-shaped rash that appears on the nose and cheeks is one common sign of lupus.American Academy of Dermatology National Library of Dermatologic Teaching Slides

Causes of lupus

It’s not clear what causes lupus, though it does appear to run in families, like other autoimmune diseases. It could be some combination of genetic factors, environmental triggers and hormones.

Triggers of lupus can include:

  • Sunlight
  • Ultraviolet light
  • Certain drugs
  • Infections or viral illnesses
  • Exhaustion
  • Emotional or physical stress
Lupus is an autoimmune disease that can affect different parts of your body, including your skin, kidneys, heart, joints and lungs.
Lupus is an autoimmune disease that can affect different parts of your body, including your skin, kidneys, heart, joints and lungs. American Academy of Dermatology National Library of Dermatologic Teaching Slides

Diagnosing lupus

Diagnosing lupus can be tricky for a few reasons. Symptoms can vary from person to person. The symptoms are also similar to the symptoms of a lot of other diseases — and symptoms of lupus can come and go. It can take years to get a lupus diagnosis.

To help diagnose lupus, doctors look for certain conditions.

Doctors may check for:

  • Certain rashes
  • Sensitivity to sun or light
  • Sores in the mouth
  • Arthritis
  • Inflammation of the lining of the lungs or heart
  • Certain kidney, neurological, blood or immunologic problems
  • Abnormal antinuclear antibody

Treatment for lupus

There’s no cure for lupus, so when considering how to treat lupus, doctors focus on helping people manage their symptoms, control their immune system and protect their organs. Many people see a dermatologist for treatment of their skin and a rheumatologist for their internal symptoms. They may see other specialists for lupus treatments, as well.

Doctors will consider symptoms, age, lifestyle and other health conditions when they recommend treatments for lupus. There are lots of different medications to control lupus, each with different side effects and benefits. Some patients keep journals to track symptoms and the effect of treatments.

Hernandez manages her lupus through daily steroids and eating healthy, among other medical treatments. "I don't have those pains like I used to have in the beginning, but I can't just be like, oh, today I don't have pain, so let me not drink my medication because it makes me feel a certain way," she said.

For people with lupus, it’s crucial to protect your skin from the sun. “All forms of lupus tend to be sun-sensitive, so really strict sun protection is very important,” said Arthur.

But the effects of sun for someone with lupus don't just stop at the skin. “The exposure to the sun can cause the disease to flare,” Ferris said. “The joints can get worse, there can be kidney issues, so it’s really important to avoid the sun.”

Lupus and fertility

Both lupus treatments and the condition itself can have long-term effects on fertility, according to the Lupus Foundation of America. In fact, Hernandez was so convinced she wouldn't be able to have kids after getting her diagnosis that she told her husband, who has always wanted to be a dad, that there would be "no hard feelings" if he left her. "He said, 'No way in hell,'" she recalled, laughing.

The Centers for Disease Control and Prevention recommend that women with lupus have their condition in remission for six months before getting pregnant, work with an OB-GYN who specializes in high-risk pregnancies, and call their doctor right away if they start to experience symptoms of a lupus flare-up, most common in the first and second trimesters. Most babies born to moms with lupus are healthy.

Hernandez's recent progress with her lupus has her on track to get pregnant soon.

"I know many of my (lupus) warriors are mothers, and they're beautiful, and some warriors like myself, it takes a little longer, but I'm not losing hope," she said. "Now, lupus doesn't control me. But now, I am using it to help."