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For those newly diagnosed with systemic lupus erythematosus (SLE), understanding the journey ahead is crucial. Recent research has revealed important insights about organ damage risk that every lupus warrior should know, especially during those critical first years after diagnosis.
The First Year: A Critical Window
A groundbreaking longitudinal study analyzing data from over 4,200 people with SLE has uncovered a significant pattern: the risk of organ damage is highest during the first year after diagnosis. The numbers tell a compelling story - 20% of patients experienced organ damage in their first year, with this risk gradually declining to 11% in the second year and 9% in the third year. After five years, the risk stabilizes at about 5% annually.
This early damage typically affects several key areas:
Bones and joints
Brain function
Kidney health
Cardiovascular system
Understanding the "Why" Behind Early Damage
The higher risk during the first year can be attributed to two main factors: 1 - the intensity of initial disease activity and 2 - the aggressive treatments often necessary during this period. High-dose glucocorticoids (aka steroids) and immunosuppressants, while essential for controlling inflammation, can contribute to organ damage. As treatment plans are refined and inflammation becomes better managed, the likelihood of new damage typically decreases.
Self-Care as a Shield: Protecting Your Health
Managing SLE isn't just about medical treatments – it's about respecting your body's needs and limitations. Here's how you can protect yourself during this crucial period:
Essential Self-Care Strategies
Maintain regular communication with your healthcare team
Monitor and report new or worsening symptoms immediately to your medical team
Follow medication schedules
Practice sun protection consistently
Listen to your body's needs for rest
Beyond the Basics: Honoring Your Limits
Remember that self-care isn't an indulgence – it's a necessity. This means:
Setting clear boundaries with others
Accepting help when needed
Modifying activities to match your energy levels
Using mobility aids without shame when necessary
Taking preventive rest breaks
ASKING for help! I know it's so hard, but it can be the difference between thriving with Lupus or struggling for much longer
Building Your Support System
Living with lupus is not a journey you should face alone. Whether you're newly diagnosed or years into your journey, sharing experiences and learning from others can be invaluable.
A Message to New Warriors
Whether you're in your first year or your 20th year living with Lupus, remember that you are the only one that controls your health. Work closely with your healthcare team, pay attention to your body's signals, and don't hesitate to advocate for your needs.
Remember: Every time you honor your body's needs, you're practicing an essential form of self-respect. In the complex journey of living with lupus, putting your health first isn't selfish – it's necessary. If you're ready to get started on the diet and lifestyle changes that can help get your Lupus into remission today - contact me below!
Credit as inspiration for this blog post: https://www.mylupusteam.com/resources/organ-damage-risk-highest-in-first-year-after-sle-diagnosis?utm_campaign=&utm_medium=email&utm_source=sendgrid
References:
Samson, T. (2025). Organ Damage Risk Highest in First Year After SLE Diagnosis
American College of Rheumatology Guidelines for SLE Management
Lupus Foundation of America Research Compendium
Journal of Autoimmune Diseases: Long-term Outcomes in SLE
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