Breakout Sessions

Lupus 101: Understanding Lupus

Jag Mangru, MD

Lupus is a chronic autoimmune disease in which the body's immune system becomes hyperactive and attacks healthy tissues, mistaking them for harmful invaders like bacteria and viruses. The inflammation caused by lupus can affect many different body systems, including the skin, joints, kidneys, heart, lungs, brain, and blood cells.

The Power of Your Story

Chandra Heard 

The power of your story lies in its ability to connect, inspire, and influence others on a deeply personal level. Everyone has a unique narrative shaped by experiences, struggles, and triumphs, and when shared, it becomes a source of strength and resilience for both the storyteller and the listener. Whether you are facing a chronic illness like lupus, overcoming obstacles, or achieving personal victories, your story can:

• Raise Awareness: By telling your story, you shed light on lesser-known challenges, like living with lupus, fostering understanding and empathy in your community.
• Inspire Others: Your perseverance and courage can inspire others facing similar battles, reminding them they’re not alone and motivating them to keep going.
• Build Community: Sharing your story helps build connections, bringing together those who can relate, offer support, or simply listen. It strengthens the bonds within groups like support meetings or online communities.
• Advocate for Change: Personal stories are powerful advocacy tools. They can influence policy, encourage donations, and lead to social change when people understand the real-life impacts behind causes like lupus research and patient support.

In your work, helping others find and share their stories can be incredibly empowering, fostering hope and creating a ripple effect of positive impact across communities.

Social Security Disability

Angel Burgess

Social Security Disability (SSD) is a crucial federal program in the United States that provides financial assistance to individuals who are unable to work due to a disabling condition. It consists of two primary types: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSDI is accessible to individuals who have contributed to Social Security through work, with benefits calculated based on their earnings history. On the other hand, SSI offers need-based assistance to individuals with limited income and resources, regardless of their work history. To qualify for either program, individuals must demonstrate a long-term disability lasting at least 12 months or expected to result in death, which prevents substantial work. The application process often involves providing medical records and can be protracted, with initial claims frequently denied and necessitating appeals. Both programs are designed to offer crucial financial support, helping individuals meet their basic needs when they are unable to earn an income due to their health conditions.

Gentle Yoga

Beth Pashel

Yoga can be a beneficial practice for individuals living with lupus, as it provides physical, mental, and emotional support that can help manage the symptoms of the disease. Here’s how yoga can be helpful for those with lupus:

• Reduced Inflammation and Pain Relief
• Improved Flexibility and Mobility
• Stress Reduction
• Boosted Immune System
• Fatigue Management

Yoga can be a valuable tool in managing lupus symptoms by promoting physical comfort, reducing stress, and enhancing emotional well-being. With proper guidance and a gentle approach, yoga can help individuals with lupus improve their quality of life and manage their condition more effectively.

Lupus & Nutrition

Cristina Caro

Nutrition is important in managing lupus, as certain foods can help reduce inflammation, support the immune system, and improve overall well-being. While there is no specific diet that cures lupus, a balanced and thoughtful approach to nutrition can help manage symptoms and reduce the risk of flare-ups. A well-balanced, anti-inflammatory diet that is rich in whole foods, antioxidants, and heart-healthy nutrients is essential for those living with lupus. Consulting with a registered dietitian or healthcare provider can help tailor a specific diet plan to meet individual needs and improve overall health outcomes.

Lupus & the Kidneys

Jason Cobb MD

Lupus can have a significant impact on the kidneys, a condition known as lupus nephritis. This occurs when systemic lupus erythematosus (SLE), the most common form of lupus, causes inflammation in the kidneys, leading to impaired function. The kidneys play a crucial role in filtering waste from the blood and regulating fluid and electrolytes in the body, so any damage to them can have serious consequences. Early diagnosis, appropriate treatment, and lifestyle modifications can help manage the condition, slow disease progression, and improve outcomes for lupus patients. Regular follow-ups with a healthcare provider specializing in lupus and kidney disease are essential to maintaining kidney health.

Mental Health Matters

Teri Emond & Catherine Stauff MSW

Lupus can significantly impact mental health, both directly and indirectly. The chronic nature of the disease, its unpredictable flare-ups, and the stress of managing symptoms can lead to a range of mental health challenges. Additionally, lupus can affect the brain and central nervous system, contributing to neuropsychiatric symptoms. By addressing both the physical and psychological aspects of lupus, individuals can better manage their mental health. Combining medical treatment, therapy, and lifestyle changes can improve quality of life and emotional well-being for those living with lupus.

No More Shoulds

Ellen Sichel

Sometimes things feel lousy. And sometimes, things actually are lousy. I’m not saying they aren’t. But when we’re in the muck, we can still have moments of gratitude, appreciation, contentment, relaxation, nourishment …even joy.

You’re active and in the thick of life. Maybe you have a chronic illness – or you have a spouse or loved one who does. Or maybe you’re just someone who tunes in to the news and - poof! – you’re outraged.

My work is for you. The regular people. The people who find themselves in pain or with health issues. The people who are taking care of other people. The people who aren’t sure they’ve got the strength to keep going, let alone cope. Listen, I see you. And sometimes I still feel that way, too. We’re all in this together.

Lupus & the Eyes

William Hood MD

Lupus can affect the eyes in several ways, leading to a range of ocular symptoms and conditions. Eye problems in lupus are often related to inflammation and can impact different parts of the eye. Lupus can impact the eyes in various ways, from dryness and irritation to more severe conditions like retinopathy and uveitis. Regular eye exams and proactive management are essential for maintaining eye health and addressing any complications that arise. Working closely with healthcare providers to monitor and treat ocular symptoms can help prevent significant damage and improve overall quality of life for those living with lupus.

Advocacy

Christopher Reed & Aleta McLean

Advocacy for lupus involves promoting awareness, supporting research, influencing policy, and providing resources for those affected by the disease. Effective advocacy helps improve the quality of life for individuals with lupus, enhances research funding, and shapes healthcare policies. Through collective efforts in advocacy, the lupus community can work towards better treatment options, increased support, and ultimately, a cure for lupus. Engaging with organizations, participating in campaigns, and using personal stories are all important ways to contribute to lupus advocacy.

Zumba

Ingrid Pérez-Martin

Zumba, a dance-based fitness program combining energetic music with aerobic exercises, can offer several benefits for individuals with lupus. The following are some of the benefits of Zumba for individuals living with lupus:

• Improved Cardiovascular Health 
• Increased Energy Levels
• Enhanced Mood and Mental Health 
• Social Interaction

Zumba can be a fun and beneficial form of exercise for individuals with lupus, offering cardiovascular, emotional, and social benefits. However, it is essential to approach it thoughtfully, considering your health status and symptoms. Consulting with your healthcare provider and listening to your body can help ensure that you enjoy the benefits of Zumba while minimizing any risks associated with lupus.

Learning to Care for the Caregiver

Kevin & Catherine Stauff

Caregiving for someone with lupus can be challenging yet rewarding. Caregivers play a crucial role in supporting individuals with lupus by managing their health needs, providing emotional support, and helping with daily activities. By educating yourself about lupus, maintaining open communication, and seeking support when needed, you can effectively support the person you’re caring for while also taking care of yourself.