May is Lupus Awareness Month

Lupus awareness purpleWritten by Casey Hersch, MSW, LCSW

What is Lupus:

Lupus--an autoimmune illness--affects an estimated 1.5 million Americans; 90 percent are estimated to be women.

The AMERICAN COLLEGE OF RHEUMATOLOGY has listed the following as criteria for a diagnosis:
A diagnosis of 4 or more of the 11 symptoms in a patient's history are required:

• Malar rash: Butterfly rash or facial erythema (red skin rash)
• Discoid rash
• Photosensitivity
• Oral or nasopharyngeal ulcerations
• Nonerosive arthritis
• Serositis (pleuritis or pericarditis)
• Renal disorder (persistent proteinuria or cellular casts)
• Neurologic disorder (seizures or psychosis)
• Hematologic or blood disorder (hemolytic anemia, or leukopenia, or lymphopenia, or thrombocytopenia must be detected on two or more occasions; thrombocytopenia must be detected in the absence of drugs known to induce it)
• Immunologic disorder (anti-double stranded anti-DNA test; positive anti-Sm test; false-positive syphilis test)
• Positive antinuclear antibody (ANA) titer (in the absence of drugs known to induce it)

Seeking physical and emotional support is essential

Symptoms include physical and emotional. It is not uncommon for patients with Lupus to experience stress, depression, anxiety, and other mood symptoms while living with the symptoms, remissions/relapses, adjustment to the symptoms, loss of self esteem, and strained relationships (difficultly maintaining a consistent schedule, misunderstanding of the condition). Pain and not feeling well is difficult and stressful. Seeking support from a licensed therapist to address the emotional components of Lupus is useful and effective. Therapists can help reduce stress, offer perspective, and aid with adjustment--THEY CAN OFFER HOPE! We can all use this no matter what the challenge! Better yet, they aren't living your life, so they offer insight from a neutral point of view which simplifies and helps with coping. No one should do this alone!

Participate in a Support Group

Studies indicate that participation in a support group not only increases ability to cope with the illness, but increases self- esteem, and enhances one's day to day life through learning tips for how to live with illness.

Support groups for Lupus Survivors include
http://www.usinlupus.com
LupusConnect https://resources.lupus.org/entry/lupus-connect-online-community

Get Educated

One of the best ways to be empowered over an illness is to get educated about it
You are an expert on your body--the more informed you are, the easier it will be to customize treatment

There are many resources available:

The Lupus Foundation of America has 300 chapters and support groups in 23 states offering education, referrals, public seminars and support.
http://www.lupus.org

Some additional resources include:

American Autoimmune Related Diseases Association, Inc.
https://www.aarda.org

American College of Rheumatology
https://www.rheumatology.org

Arthritis Foundation
https://www.arthritis.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases
https://www.niams.nih.gov

 

 

 

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