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What It's Like to Live with Lupus? - And How you can help?

What It's Like to Live with Lupus? - And How you can help?

Imagine if, one day, your body decided to turn on itself. Instead of keeping you healthy and fighting against infections, it started attacking healthy cells and tissues for no clear reason. 

This is what it's like to live with lupus.

The disease fights your immune system, and can damage various parts of your body, including your joints, skin or internal organs. Symptoms may come and go in "flares," ranging from mild to life-threatening.

Despite the severity, most people don't know much about lupus, even though millions of people around the world live with it every day. 

"One of the most frustrating things about living with lupus — beyond, of course, the physical limitations — is dealing with the unintentional condescension, belittling and obnoxiousness born of misinformation and lack of information," says writer Alexander Hardy, who was diagnosed with lupus in 2005.

Raising awareness is important to creating a culture of compassion for those with lupus that can, in turn, increase funding for potentially life-saving research. In honor of Lupus Awareness Day on Tuesday, here are eight important facts you need to know about the illness, and how you can help.

1. Lupus is a chronic autoimmune disease.

Autoimmune diseases are a set of illnesses in which the immune system attacks healthy cells. In addition to lupus, examples of other autoimmune diseases are celiac, multiple sclerosis and rheumatoid arthritis. Many people can have symptoms of multiple autoimmune disorders, but they don't have to coincide. 

Chronic illnesses are long-lasting, ranging from months to years. Lupus symptoms are often recurring, meaning that they can subside and come back.

"Some days I feel like I don't even have it, and other days my body is harshly reminding me that I'm sick," Brittany Smith, who was diagnosed with lupus in 2013, tells Mashable.

This combination of chronic illness and autoimmune disease makes living with lupus especially difficult — you never know when symptoms will flare up and attack your body's defense mechanism.

2. There is no known cause or cure for lupus.

 

Today's #lupusfact for #lupusawarenessmonth. More at lupus.org/awareness. #lupus #cruelmystery

A photo posted by Lupus Foundation of America (@lupusorg) on

 

One of the reasons lupus is so mysterious is that there's no known cause for the onset of symptoms. While immediate relatives of someone with lupus may have a higher risk of developing the disease, it's not a hereditary illness. Hardy's mother, for example, has systemic and discoid lupus but their experiences with the disease are very different.

Since there is no known cause of lupus, that also means there's no way to stop it or predict its course. Instead, doctors must treat lupus symptomatically, and try to relieve pain and discomfort. And this treatment, depending on the severity of symptoms, can be "a full-time job," Hardy tells Mashable.

That can cause feelings of isolation, too. 

"When I was diagnosed with lupus six years ago, I felt utterly alone," health care consultant and activist Tiffany Peterson tells Mashable. "None of my family or friends understood what I was going through."

Peterson has since created online communities of support for lupus patients, such as #LupusChat (see more below).

3. Lupus is very difficult to diagnose.

A disease with no known cause is difficult to diagnose because doctors aren't sure what to test for. Diagnosing lupus usually involves an antinuclear antibody (ANA) test and evaluation of symptoms. While most people with lupus are positive for the ANA test, symptom evaluation is more difficult because the disease affects everyone differently. 

"After years of being misdiagnosed, I remember going to my doctor and finally saying, 'Listen, I'm so tired all the time, I'm super depressed and my hair is falling out in chunks,'" Smith says.

There are 11 frequent symptoms of lupus, and if at least four are present, patients can be diagnosed. But because lupus symptoms come and go over long periods of time, and often overlap with symptoms of other illnesses, it can take a long time for doctors to provide a lupus diagnosis.

4. An estimated 5 million people live with lupus worldwide.

An estimated 5 million people worldwide — including 1.5 million Americans — live with lupus. Various celebrities, such as Nick Cannon, Toni Braxton and Selena Gomez, live with the disease and have been vocal about the need for a cure.

5. Lupus is often an "invisible illness."

"Whenever I tell someone I have lupus, they almost always say, 'But you don't look sick,'" Smith says. While the signature butterfly rash is a common symptom of lupus, many other symptoms are not always visible, like organ fatigue, fevers and pain.

Even if you can't tell that someone is sick, "it's important to respect the work it takes to not look as crappy outwardly as people may feel internally," Hardy says.

Someone you work with, a friend or relative may be fighting very hard against this disease, even if you can't see it.

6. Women and people of color are disproportionately affected.

Although the number of men with lupus has increased, women between the ages of 15 and 45 continue to make up more than 90% of those diagnosed. People of color are diagnosed at two to three times the rate of white people.

Since most of those with lupus are women at child-bearing age, there's also prevalence of high-risk pregnancies. However, due to advanced technology and a better understanding of the disease, 80% of women with lupus with nonactive symptoms can now have successful pregnancies.

7. There are three different types of lupus.

Systemic lupus (SLE) is the most common form of lupus, which can affect all parts of the body. However, there other forms include discoid lupus, which only affects the skin and has no other organ complications, and drug-induced lupus erythematosus (DILE), caused by taking a triggering medication.

While DILE has similar symptoms to SLE, the former's symptoms will typically subside within weeks after patients stop taking the responsible drug.

8. People with lupus are at risk for many other illnesses.

Lupus is not a fatal disease on its own, but the effects it has on one's body can be life-threatening. 

"Lupus attacked my lungs, kidneys, heart, and brain," Hardy says. "I went from diagnosis to coma in two days, with no readily identifiable symptoms beyond flu-like ones."

People who have lupus are at risk for many other medical illnesses, including cardiovascular disease, poor mental health, renal disease, blood clotting, stroke, heart failure and high blood pressure. The potential for these complications is a source of fear for many of those who live with lupus.

"I'm scared that my 9-year-old son will have to grow up without me if lupus wins," Smith says. "I'm scared that things will get worse with my health. I'm scared that I won't be strong enough to fight this disease and win."

How you can help

If you want to make a difference in the lives of those who live with and are at risk for lupus, here are some initial things you can do.

Follow #LupusChat to learn about the experiences of those with lupus.

This platform is one of the online communities that Tiffany Peterson created "to provide lupus patients with the support, resources, and community that I never had when I discovered I had lupus."

Although it's primarily for lupus patients, #LupusChat welcomes caregivers, friends, family, and all those looking to learn to join the conversation.

  • Use social media to increase awareness.

 

It may not seem like much, but considering the mystery that surrounds lupus, spreading awareness on social media can be extremely beneficial to the cause.

Wear purple nail polish or clothes (the official color for lupus awareness), throw up your "L" and share a video to your followers. Take it upon yourself to educate friends and family about the illness.

  • Make a donation to lupus research, or volunteer your time.

 

You may not be able to donate concert tour proceeds like Selena Gomez does, but any amount is a step in the right direction.

The Alliance for Lupus ResearchLupus Research Institute and Lupus Foundation of America are all impactful research organizations that could use your dollar.

You can also participate in a Lupus Walk in your state — great opportunities to connect with people whose lives have been affected by lupus, and to learn more ways that you can help in your own community.