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Living with Lupus: Talking to Family and Friends

By: | Tags: | Comments: 0 | January 16th, 2017

Diagnosing lupus can be a long, complicated process due to the fact that its symptoms vary from person to person and they are also similar to those of other diseases.

As with any disease, as a patient you know that it’s important to ask questions during the diagnostic process and throughout your treatment.

But how do you answer questions from your family and friends? While a lupus diagnosis is certainly life changing for lupus patients, it can also lead to uncertainty from those around you as well. Being able to share factual information about lupus can help alleviate some common concerns.

Is lupus contagious? As with any disease diagnosis, it’s common for family and friends to wonder if the disease is contagious. With all certainty, you can let them know that lupus is not contagious. No one can get lupus from you nor can you give lupus to anyone.

Is lupus fatal? Lupus is a chronic disease that the patient will live with for the rest of their life. There is no cure for lupus, but with an array of treatment options available, 80-90% of lupus patients can expect to live an average lifespan. The disease varies from person to person, and ranges from mild to severe. The more severe the case, the more difficult it can be to treat and control. Severe flare-ups can, however, become life threatening.

Who gets lupus? Lupus is most often diagnosed in women, and women of color are two to three times more likely to develop lupus than Caucasian women. However, anyone can develop lupus. The disease has been diagnosed in women, men, teenagers and children. The diagnosis is most common between the ages of 15-44.

Is lupus a form of arthritis? Arthritis is a common symptom of lupus, but lupus is not a form of arthritis. While they are both caused by inflammation, the characteristics of the inflammation, long-term effects and treatments are very different.

Is lupus related to cancer? Lupus is an autoimmune disease. It is not a type of cancer. Some treatments can include immunosuppressant drugs that are used in chemotherapy.

Is lupus related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome)? No, it is not. With lupus, a person’s immune system is overactive, whereas people with HIV or AIDS have underactive immune systems.

How many people have lupus? The Lupus Foundation of America estimates that 1.5 millions Americans have lupus, although the actual number is unknown as no large-scale studies have been conducted. There are more than 16,000 new cases reported annually in the U.S.

The Lupus Foundation of America is an excellent source of information for lupus patients, friends and family members of lupus patients, and caregivers. Your physician or other members of your health care team are also a great source of information for you and your support team.

If you have questions, don’t be afraid to ask. Knowledge, as they say, is power.

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