Living Columns & Blogs

Know the invisible symptoms on World Lupus Day

Today is World Lupus Day; an estimated 5 million people have Lupus. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. There is no known cause or cure for Lupus.

Think of yourself as an iceberg — 25 percent of yourself is visible and can be seen by everyone, and 75 percent is hidden and lurks in the deep recesses within you. That is what it is like for a person with Lupus. With only some of the symptoms visible, it makes it very hard to properly diagnose the disease correctly. Also, the symptoms may come and go without warning, which makes diagnosing a Lupus patient even harder.

The visible symptoms


▪ A reaction to the sun or light that causes a skin rash to appear or to get worse.

▪ Redness or rash across your nose and cheeks (i.e. butterfly rash). Sudden, unexplained hair loss.

The invisible symptoms

Muscles and joints

▪ Achy, painful and/or swollen joints for more than three months.

▪ Persistent, extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep.

Brain and nervous system

▪ Seizure or unexplained confusion that lasts for more than an hour

▪ Unexplained fever higher than 100 degrees for more than a few days.

Heart or lungs

▪ Chest pain while taking deep breaths.

Eyes, nose and mouth

▪ Sores in your mouth or nose that last for more than five days, or sores on your skin that will not heal.

Blood and circulatory system

▪ You’ve been told you have anemia, low white cell count or low platelet count.

▪ Fingers and/or toes become red or blue, or feel numb and painful.

▪ Blood clotting problems.


▪ You’ve been told you have protein in your urine.

▪ Swelling in your legs and ankles on both sides at the same time.

You can help and show your support and promote Lupus awareness by signing the petition to the World Health Organization urging it to make Lupus an international health priority. You can find more information at, or 800-800-5776.

And remember to put on purple for Lupus awareness on May 19.

Melissa Ostroff-Gundrum is a volunteer patient advocate with the Lupus Foundation of Pennsylvania.