If you're living with a chronic illness, you're in the right place.

Saturday, September 20, 2014

In the Spotlight: Lupus

7:24 PM Posted by Stephanie Horgan , , ,
This month to continue our Rare Disease of the Month series we are focusing on lupus. It is a mysterious illness that is often misdiagnosed and masks itself in other diagnoses. Much research is needed to improve the quality of life for lupus patients!

Lupus is a chronic autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). In patients with lupus, their bodies create autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. Some of the common symptoms of lupus are painful joints, fever, rashes on the skin and face, sensitivity to sunlight, chest pain, ankle swelling, hair loss, and mouth ulcers.  Patients experience flares and remissions throughout the course of their illness. Lupus symptoms can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life. Some celebrities with lupus include first lady Barbara Bush and pop stars Seal, Michael Jackson, and Selena Gomez.
How Common is It?
According to the Lupus Foundation of American, at least 1.5 million Americans have lupus. More than 16,000 new cases of lupus are reported annually across the country; it is believed that 5 million people throughout the world have a form of lupus. Ninety percent of people with lupus are women, and the disease strikes mostly women of childbearing age (those who are between the ages of 15 and 44 years old). However, men, children, and teenagers develop lupus, too. Women of color are two to three times more likely to develop lupus than Caucasians. However, people of all races and ethnic groups can develop lupus.

What About Diagnosis and Treatment?
There is no one specific test for lupus and since the symptoms overlap with many other illnesses, it can take years to diagnose. According to the Lupus Initiative, patients spend an average of four years and see three physicians before their disease is correctly diagnosed. Physicians make the diagnosis based on medical history, symptoms, and blood work and ruling out other diagnoses. To diagnose lupus, a doctor should be able to find physical or laboratory evidence of the condition, such as swelling of the joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy that shows evidence of the disease.

Medications for lupus sometimes include steroids, anti-inflammatory medications, and pain relievers to help with symptoms. Antimalarials, such as hydroxychloroquine, are used to decrease inflammation for patients. There is a drug called Mycophenolate mofetil (CellCept) that slows down the immune system which is attacking itself. There is also a medication called Benlysta (belimumab) that is thought to reduce the body's ability to attack its own tissues. Antimetabolites and anti-transplant rejection drugs are another category of drugs used to treat lupus.
What about the Social and Emotional Impact? 
As with other chronic illnesses, the symptoms of lupus can be extremely frustrating and limiting for patients. Some people experience rashes on their face and hair loss; these symptoms can affect self-esteem and limit patients' desire to be social if they are receiving stares or comments. Painful joints and fatigue can prevent many day-to-day activities, which may impact social and emotional functioning. Patients with lupus are often very sensitive to sunlight, which can cause flares. This limits the time they are able to enjoy time outside. The unpredictability of flares can be overwhelming, but there are several self-care strategies to help patients be proactive about their illness. Gentle low-impact exercise can be helpful, as well as getting a gentle massage. Stress management techniques like mindfulness, yoga, and meditation can be helpful in decreasing any flares that occur due to stress. Seeking help from a therapist who specializes in chronic illness can also help to normalize the impact of the illness and deal with any emotional effects of it.

Helpful Resources
Lupus Foundation of America 
Includes resources about financial assistance, finding a clinical trial, educational programs, legal issues, caregiving support, message boards, and local walks to raise money for Lupus research

Lupus Research Institute
Learn about the latest research and treatments for lupus, and how you can advocate for finding a cure

The Lupus Initiative
Free resources to learn more about how to address the persistent gaps between the lupus-related health status of minorities and non-minorities, women and men, and those above and below the poverty line

The US in Lupus
This site has a mobile app to track symptoms, stories from other patients, and articles on support.