My Diagnosis: What is APS+SLE+?
🩸 Near-Chaotic: Living with APS + SLE + Autoimmune Blood Disease
⚠️ When Your Immune System Becomes the Storm:
Antiphospholipid Syndrome (APS) and Systemic Lupus Erythematosus (SLE) are autoimmune diseases that can collide in unpredictable, life-altering ways.Together, they create a near-chaotic internal landscape—where the body’s defense system mistakenly attacks itself, triggering blood clots, inflammation, and organ damage.
APS causes the immune system to produce abnormal antibodies that target phospholipids—fat molecules essential to cell membranes.These antibodies increase the risk of blood clots in veins and arteries, leading to strokes, heart attacks, miscarriages, and kidney failure.
SLE, often called Lupus or Systemic Lupus Erythematosus , is a systemic autoimmune disease that can affect the skin, joints, kidneys, brain, and more. When lupus overlaps with APS, the result is a volatile mix of symptoms that can shift rapidly and unpredictably.
🧬 Symptoms That Don’t Sit Still:
Living with APS and SLE means navigating a rotating cast of symptoms, including:
•   Deep vein thrombosis (DVT) or pulmonary embolism
•   Recurrent miscarriages or pregnancy complications
•   Stroke or transient ischemic attacks (TIAs)
•   Chronic fatigue, joint pain, and skin rashes
•   Low platelet counts, anemia, and heart valve issues
Some days feel manageable. Others spiral into emergency territory—with chest pain, swelling, or sudden neurological symptoms that demand immediate care.
🧩 Rare, Overlapping, and Often Undiagnosed
APS and SLE are individually rare. Together? Even rarer. Add autoimmune blood disease to the mix—like Evans syndrome, immune thrombocytopenia (ITP), or hemolytic anemia—and you’re dealing with a diagnostic unicorn.
Many doctors hesitate to diagnose these conditions, especially when they overlap. Why? Because it’s messy. It doesn’t fit the textbook. And in a system built for clean categories and quick fixes, complexity is often sidelined.
Patients are told “it’s anxiety,” “it’s just hormones,” or “your labs look fine.” Meanwhile, their bodies are throwing clotting events, crashing platelets, and screaming for help.
The truth is: some doctors don’t like diagnosing what they can’t easily treat. And they definitely don’t like downloading—absorbing the full scope of a patient’s lived experience, especially when it challenges their assumptions.
This leads to delayed care, misdiagnosis, and emotional exhaustion.
For many, diagnosis only comes after a crisis: a stroke, a miscarriage, a hospitalization that forces the system to pay attention.
đź’Š Treatment: Managing the Mayhem
There’s no cure, but treatment focuses on reducing clot risk and calming the immune system:
•   Blood thinners like warfarin or heparin to prevent clots
•   Immunosuppressants to control lupus flares
•   Low-dose aspirin for clot prevention in high-risk patients
•   Lifestyle adjustments to reduce triggers like smoking, immobility, or hormonal therapies
Pregnancy requires special care, as some medications are unsafe during gestation. A coordinated team approach—rheumatologist, hematologist, OB-GYN—is essential.
🧠The Invisible Battle
APS and SLE are often invisible to outsiders. The pain, fear, and unpredictability can feel isolating. But you’re not alone. Communities of patients, advocates, and researchers are working to raise awareness and improve care.
This page is for those living in the storm—those whose bodies defy easy diagnosis, whose symptoms overlap and evolve, and whose strength is forged in chaos.