UNDERSTANDING LUPUS

My Story

I was diagnosed with lupus at the age of thirty-nine. At the time, I didn't know much about the disease only that it was serious and that it could affect almost every part of my body. Two weeks after getting that diagnosis, my life changed again. I had my first stroke.

Since then, I've had a total of four strokes. Each one took something from me, but each one also taught me something about resilience. After the second stroke, I needed a walker to get around. I had to relearn how to do everything walking and even small things like writing my name. It was humbling, painful, and at times discouraging. But I refuse to give up.

My doctors told me that I likely developed lupus year's early, during my time in the Navy, when I served in Operation Desert Storm. Looking back, I can remember times I didn't feel right, but like many service members, I pushed through it. I didn't realize that my body was already fighting a battle of its own.

After being diagnosed with lupus, I was also diagnosed with seizures and Pots (Postural Orthostatic Tachycardia Syndrome). Each condition bought its own challenges seizures that came without warning, dizziness that made standing or walking difficult, fatigue that had no amount of rest could fix. The combination has made my day-to-day life unpredictable.

I was forced to take an early retirement because the disease is so debilitating. I simply can't function the way I used to because lupus changed my life. There are days when I still feel strong, and others when I am reminded just how fragile the human body can be. The medication that was supposed to help me fight lupus eventually began to take my eyesight. Slowly I started to lose the ability to see clearly. That was one of the hardest parts of the disease for me realizing that the very thing meant to help me was also hurting me.

Lupus is a quiet disease. If you look at me, you might not see it. There are no obvious scars or marks most of the time. But beneath the surface, it's powerful. It touches every part of who I am physically, emotionally, and spiritually. It has taken things from me, but it has also taught me to appreciate the small victories: the days without pain, the moments of laughter, the love of my family and friends who stand by me.

I'm still learning about lupus, and myself, and about how to keep moving forward despite everything. This disease may have slowed me down, but it hasn't stopped me. Every day, I'm still here, still fighting, and still learning what it means to live with lupus.

Lupus Awareness

Lupus Awareness has evolved significantly over the years, with numerous initiatives and campaigns aimed at educating the public and supporting those affected by the disease. In 2000, the Lupus Foundation of America established Lupus Alert Day to inform the public about the dangers of Lupus, also known as systemic lupus erythematosus (SLE). This initiative sought to raise awareness about its causes, risk factors, symptoms, and treatment options. In May of 2009 National Lupus Awareness Week was expanded into Lupus Awareness Month, providing a dedicated time to educate the public and promote understanding of the disease. World Lupus Day, observed annually on May 10th, is a global initiative designed to increase awareness, highlight symptoms, support patients, and encourage early diagnosis. The Color Purple is wildly recognized as the symbol of Lupus Awareness. For additional information, resources are available through the Lupus Foundation of America and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. 

How it affects the body

Lupus isn't just a joint pain disease it is a full body autoimmune condition that can attack almost any organ. The immune system gets confused and treats your own tissues as a threat as a result you suffer with inflammation, pain and organ damage. 

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Lupus Foundation of America offers comprehensive information on Lupus, including symptoms, diagnosis, treatment options and support services.

MedlinePlus is a resource from the US National Library of Medicine offering information on Lupus, including its symptoms, causes, and treatment options.

Lupus Connect is an online community by the Lupus Foundation of America where individuals affected by lupus can connect, share experiences, and find support.

 

Living with Lupus: "What you need to know"

There are 11 markers for diagnosing lupus. The clinical and laboratory criteria used by doctors to help identify the condition. The criteria include specific signs and symptoms like

- Malar Rash

- Discoid Rash

- Photosensitivity

- Mouth or nasal ulcers

- Nonerosive arthritis

- Serositis

- Renal disorder

- Neurological disorder

- Hematologic disorder

 

   

Welcome To My Lupus Blog

 

                 The History Of Lupus

The term Lupus comes from the Latin word for "wolf". It was first used in the Middle Ages (13th century) to describe skin lesions that looked like wolf bites. At this stage, lupus referred mainly to chronic ulcerating skin diseases, not yet recognize as systemic.

In the 19th century Pierre Cazenave (France, 1851) first described lupus erythematosus as a distinct skin disorder (later known as discoid lupus erythematosus, or DLE). 

Moriz Kaposi (1872) distinguished between discoid lupus (affecting skin only) and systemic lupus erythematosus (SLE), which involved internal organs marking the first recognition of lupus as a systemic autoimmune disease. In the early 20th century lupus remained poorly understood until laboratory methods improved. Physicians recognized autoimmune-like features: anemia, joint pain, fever, and organ inflammation.

In 1948, the discovery of the LE (lupus erythematosus) cell by Hargraves and colleagues' white blood cells engulfing the nucleus of another cell a breakthrough diagnostic clue. 

In the 50's and 60's corticosteroids were introduced as an effective treatment for lupus. Identification of antinuclear antibodies (ANA) revolutionized diagnosis. The concept of autoimmunity as a cause of disease became accepted. In the late 20th and 21st century genetic, hormonal, and environmental factors identified estrogen influence, UV exposure, and infection triggers. Treatment then became more targeted and the survival rate improved from 50 percent in 1950 to 90 percent in 2025. There are three types of lupus today

- Systematic Lupus Erythematosus (SLE) which affects multiple organs

- Cutaneous Discoid Lupus (DLE) which limits the disease to the skin.

- Drug-induced Lupus which is caused by lupus medications like hydralazine, procainamide, and isoniazid. 

Neonatal Lupus is rare but can occur from maternal autoantibodies.

Lupus Blog is a passion project aimed at educating and empowering individuals impacted by lupus. 

 

Lupus symptoms and how they are managed

There are several common lupus symptoms such as Fatigue, fever, joint pain (arthralgia/arthritis), skin rashes, and photosensitivity. The Butterfly rash across the cheeks and nose. 

Organ involvement: nephritis, pericarditis, pleuritis, CNS symptoms and anemia. 

Lupus Treatment involves a combination of medicines to suppress the immune system, such as hydroxychloriquine, corticosteroids, and biologics, alongside essential lifestyle changes like stress management, regular moderate exercise, sun protection, a healthy diet, and quitting smoking.