A life-changing lupus diagnosis at age 12 – CBS News

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A life-changing lupus diagnosis at age 12 Diana Tive, with the Lupus Research Alliance, says people with lupus are like everyone else, but sometimes they might need to rest more.

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Q1: What are the common symptoms and challenges faced by children diagnosed with lupus?

A1: Children diagnosed with lupus, formally called systemic lupus erythematosus (SLE), often experience a more severe form of the disease. Common symptoms include painful and swollen joints, fever, hair loss, mouth ulcers, and a red rash, usually on the face. Additionally, children face challenges like periods of illness known as flares, during which symptoms worsen, and periods of remission with fewer symptoms. The diagnosis and management of lupus in children can be particularly challenging due to the variation in symptoms and the need for careful monitoring and treatment.

Q2: How does the genetic predisposition influence the likelihood of developing lupus in children?

A2: Genetic predisposition plays a significant role in the likelihood of developing lupus. Research indicates that among identical twins, if one twin is affected by lupus, there is a 24% chance that the other twin will also develop the disease. This suggests a strong genetic component, though environmental factors also contribute to the onset of lupus. Factors such as female sex hormones, sunlight, and certain infections further increase the risk of developing lupus.

Q3: What are the latest EULAR recommendations for managing systemic lupus erythematosus (SLE) with kidney involvement?

A3: The latest recommendations from the European Alliance of Associations for Rheumatology (EULAR) update the management strategies for systemic lupus erythematosus (SLE) with kidney involvement. These recommendations emphasize the use of kidney biopsy for diagnosis, setting therapeutic targets and milestones, and using immunomodulatory therapies including antimalarials and biologics like belimumab. They also focus on nonimmune therapies such as kidney protection, vaccinations, and cardiovascular care. The guidance addresses issues like glucocorticoid tapering, management of kidney failure, and family planning considerations.

Q4: What are the current treatment options for children diagnosed with lupus?

A4: Treatment options for children diagnosed with lupus include nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, immunosuppressive drugs, hydroxychloroquine, and methotrexate. While corticosteroids are effective in managing flare-ups, their long-term use can lead to significant side effects. The treatment plan is usually tailored to the individual's symptoms and severity of the disease, with the goal of minimizing flares and managing symptoms effectively.

Q5: What role do environmental factors play in the onset of lupus in children?

A5: Environmental factors are believed to play a crucial role in the onset of lupus. Exposure to sunlight, smoking, infections, and vitamin D deficiency are some of the factors that can trigger the immune system to mistakenly attack healthy tissues, leading to lupus. These factors, in combination with genetic predispositions, increase the likelihood of developing lupus in children.

Q6: How does lupus impact the quality of life in affected children and their families?

A6: Lupus significantly affects the quality of life for both children and their families. The unpredictable nature of the disease with its flares and remissions can cause physical and emotional stress. Children may experience fatigue, pain, and limitations in physical activities, impacting their social and academic life. Families often need to adjust their routines and provide ongoing medical care, which can be demanding and emotionally taxing.

Q7: What are the possible complications associated with lupus in children?

A7: Complications associated with lupus in children include an increased risk of cardiovascular disease, kidney damage, and infections due to a weakened immune system. The disease also poses challenges for growth and development, and can lead to psychological issues stemming from chronic illness and treatment side effects. Monitoring and early intervention are crucial to managing these potential complications and improving long-term outcomes.

References:

  • Lupus
  • EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement: 2025 update.