Make Lupus Visible: Annemarie’s story

By Galapagos

“We don’t always look sick, but we are sick. If there is more awareness about lupus, and what it’s like to live with it, lupus patients would be accepted more by society.”

Annemarie is living with Systemic Lupus Erythematosus (SLE). She’s faced with a lot of misunderstanding and prejudice, and her social life has suffered undeniably from that. Luckily, her husband – the love of her life – stood by her, and he still does.

On World Lupus Day, we share Annemarie’s story, hoping to help educate the public about lupus, and shed light on how people like Annemarie are courageously living their life, despite the challenges.

So join us in making lupus visible, together with Annemarie! 💜

About Systemic lupus erythematosus (SLE)

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect many different organs and tissues in the body, including the skin, joints, kidneys, heart, and lungs. It occurs when the immune system attacks healthy cells and tissues, leading to inflammation and tissue damage.[12]

SLE is relatively rare, affecting approximately 0.1% to 0.2% of the population worldwide.[13] However, it is more common in certain populations, including women, African Americans, Hispanics/Latinos, and Asians.[14] The disease can occur at any age, but it is most often diagnosed in people between the ages of 15 and 45.[15]

The symptoms of SLE can vary widely from person to person and can also change over time. Some common symptoms include fatigue, fever, joint pain and stiffness, skin rashes, hair loss, and sensitivity to light.[16] In severe cases, SLE can cause organ damage and life-threatening complications.[17]

There is currently no cure for SLE, but there are treatments available that can help manage symptoms and prevent complications. These include anti-inflammatory medications, immunosuppressive drugs, and lifestyle changes such as getting regular exercise and eating a healthy diet.[18]

[12] Lupus Foundation of America. What is lupus? Retrieved from https://www.lupus.org/resources/what-is-lupus

[13] Rees F, Doherty M, Grainge MJ, Lanyon P, Zhang W. The worldwide incidence and prevalence of systemic lupus erythematosus: a systematic review of epidemiological studies. Rheumatology (Oxford). 2017 Feb 1;56(2):194-205. doi: 10.1093/rheumatology/kew335. PMID: 27789666.

[14] Centers for Disease Control and Prevention. Lupus. Retrieved from https://www.cdc.gov/lupus/facts/index.html

[15] Lupus Foundation of America. Who gets lupus? Retrieved from https://www.lupus.org/resources/who-gets-lupus

[16] Mayo Clinic. Systemic lupus erythematosus (SLE). Retrieved from https://www.mayoclinic.org/diseases-conditions/systemic-lupus-erythematosus/symptoms-causes/syc-20365789

[17] American College of Rheumatology. What is lupus? Retrieved from https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Lupus

[18] Lupus Foundation of America. How is lupus treated? Retrieved from https://www.lupus.org/resources/how-is-lupus-treated