Category: Lupus

How Participating in a Cancer Trial Gave Me a Life Skill That Helps Me Manage My Lupus

Why I Joined a Clinical Trial In this edition of PatientsLikeMe’s series “Why I Joined a Clinical Trial,” we feature the story of Ginger Hermes Ortiz, who has been living with chronic myeloid leukemia and systemic lupus erythematosus. She shares why participating in one trial helped her learn how to manage the mental toll of… Continue reading How Participating in a Cancer Trial Gave Me a Life Skill That Helps Me Manage My Lupus

Being in a Clinical Trial Taught Me a Lot About My Disease

Why I Joined a Clinical Trial In this edition of PatientsLikeMe’s series “Why I Joined a Clinical Trial,” we feature the story of Ay Me Han, age 44, who was diagnosed with systemic lupus erythematosus at age 15. She explains why she’s always eager to participate in new research. My Story: Ay Me Han Every… Continue reading Being in a Clinical Trial Taught Me a Lot About My Disease

Navigating Pregnancy Challenges with Lupus

Approximately 90% of systematic lupus erythematosus (SLE) patients are women, with the condition most frequently diagnosed during their childbearing years (ages 15 to 44)1. This timing presents unique challenges for those navigating pregnancy and motherhood.  Pregnancy Risks With a Lupus Diagnosis Studies show that women with lupus face a higher risk of obstetric complications, including… Continue reading Navigating Pregnancy Challenges with Lupus

Lupus and Mental Health: Understanding Neuropsychiatric Symptoms and Care

Mental health is a critical aspect of Systemic Lupus Erythematosus (SLE), a chronic autoimmune disease that affects multiple organ systems. Between 15% and 75% of individuals with SLE experience psychological symptoms, such as depression, anxiety, cognitive dysfunction, and psychosis1-4. These can either result directly from the disease or arise as secondary effects due to its… Continue reading Lupus and Mental Health: Understanding Neuropsychiatric Symptoms and Care

Living with Lupus Nephritis: Symptoms, Risk Factors, and Ongoing Care

Lupus nephritis (LN) is a serious and frequent complication of Systemic lupus erythematosus (SLE), a chronic autoimmune disorder that leads to inflammation and damage in multiple organ systems, particularly the kidneys. It typically emerges within 3 – 5 years after SLE diagnosis and increases the risk of end-stage renal disease (ESRD).  It affects approximately 40%… Continue reading Living with Lupus Nephritis: Symptoms, Risk Factors, and Ongoing Care

Empowering Yourself with Lupus: Key Steps to Advocate for Your Health and Well-Being

Systematic lupus erythematosus (SLE / Lupus) affects everyone differently, with symptoms that can fluctuate over time1. The most reported symptoms of lupus include fatigue, joint pain and swelling, and skin (butterfly) rashes2. However, some of the rarer symptoms, such as gastrointestinal issues (abdominal pain and nausea) and pulmonary complications (interstitial lung disease and lupus pneumonia),… Continue reading Empowering Yourself with Lupus: Key Steps to Advocate for Your Health and Well-Being

7 Things You Need to Know About Living with Lupus

After months or even years of experiencing symptoms like extreme fatigue, skin rashes, pain, or swelling in the joints, you finally got a diagnosis. It’s lupus. Because symptoms differ from person to person, can come and go, vary in intensity, and mimic symptoms of various other diseases, lupus can be difficult to diagnose. Lupus is a… Continue reading 7 Things You Need to Know About Living with Lupus

From Lupus Diagnosis to Fearless Patient Advocate

Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose.… Continue reading From Lupus Diagnosis to Fearless Patient Advocate

Lupus and period problems, explained

Are you living with lupus (SLE) and experiencing problems with your monthly period? (Like, not getting it. Or having a really heavy, long period.) And have you ever wondered how lupus might play a role in this? Read on. What does the research show? Small studies have found that people with SLE are at greater risk… Continue reading Lupus and period problems, explained