Systemic Lupus Erythematosus (SLE), commonly known as lupus, is a chronic autoimmune disease that can cause widespread inflammation and damage to various body systems. While it is often associated with adults, lupus can also affect children and adolescents. Early detection and management are crucial for improving the quality of life and long-term outcomes for young patients with lupus.
This blog post will delve into the signs and symptoms of lupus in children and youth, providing comprehensive information for parents, caregivers, and healthcare providers.
What is Systemic Lupus Erythematosus (SLE)?
Our bodies are made of unique building blocks called cells. Just as we take in food and oxygen and carry out various processes to sustain our health and well-being, each cell in our body performs similar functions under the coordination of a central core processing unit called the nucleus. The functions of the nucleus are akin to the Central Processing Unit (CPU) of a computer.
In Systemic Lupus Erythematosus, our natural defense system, the immune system, mistakenly attacks the nucleus, jeopardizing all body functions from head to toe. This autoimmune response leads to the wide range of symptoms and complications associated with lupus.
Do Children Also Suffer from Lupus?
Contrary to popular belief that lupus is rare in children, 10-20% of all lupus patients had disease onset from their childhood. In Kenya, it is estimated that for every 100,000 people, about 5,600 have lupus. Thus, we estimate we have about 2.8 million people suffering from lupus, among whom about 600,000 are children.
Is Lupus in Children Genetic?
Our natural defense system, the immune system, has a vast array of artillery at its disposal to protect us. One of those is a special group of proteins called complement. Defects in the complement system are one of the factors associated with early-onset lupus in children from the toddler age group.
Newborn children born to mothers who have lupus have up to a 20% risk of developing lupus. Thus, it is important for ladies with lupus aspiring to be mothers to work closely with their rheumatologist and obstetrician to ensure the disease is well-controlled before conception.
The Thousand Faces of Lupus
We have a popular saying in rheumatology that lupus has “1000 faces” to highlight the vast spectrum of symptoms in lupus. One of the most well-known signs is the “butterfly rash” or “malar rash” as illustrated below.
This rash typically occurs over the cheeks and spares the creases around the nose. The origin of the word lupus was from the Latin word for wolf, which is attributed to the thirteenth-century physician Rogerius, who used it to describe erosive facial lesions typical of the butterfly rash that were reminiscent of a wolf’s bite.
Signs and Symptoms of Lupus in Children and Youth
The signs and symptoms of lupus in children and youth can vary widely, making it challenging to diagnose. The initial symptoms can be very non-specific such as fatigue, weight loss, fever, and hair loss. Here is a comprehensive list of potential symptoms affecting various body systems:
- Brain and Nervous System
- Poor concentration
- Headaches
- Convulsions
- Numbness
- Tingling
- Ear, Nose, and Throat
- Sores in the nose and mouth, often painless
- Recurrent nose bleeding
- Difficulty swallowing food
- Eyes
- Dry eyes (sicca symptom)
- Painful red eyes
- Sudden loss of vision
- Bloody tears (haemolacria)
- Pulmonary System (Lungs)
- Pain while breathing in and out (pleurisy)
- Cough
- Difficulty breathing
- Coughing up blood-stained sputum (haemoptysis)
- Pneumonia-like symptoms
- Cardiac System (Heart)
- Abnormal heart rhythm (arrhythmia)
- Blood clots in vessels (thrombosis)
- Heart valve disease (valvular disease)
- Heart muscle disease (pancarditis)
- Gastrointestinal (Digestive System)
- Hyperacidity
- Hepatitis (inflammation of the liver)
- Pancreatitis
- Appendicitis
- Vomiting blood (hematemesis)
- Blood in stool
- Kidneys
- Blood in urine
- Protein in urine
- Acute renal failure
- Musculoskeletal System
- Arthritis
- Muscle disease (myositis)
- Gangrenous toes and fingers due to reduced blood supply
- Skin
- Red spotted rash (vasculitis)
- Rash in sun-exposed areas (photosensitive rash)
- Disc-shaped rash that heals with scarring
Importance of Early Diagnosis and Management
Early diagnosis and management of lupus in children are crucial to preventing long-term damage and improving quality of life. Parents and caregivers should be vigilant for the signs and symptoms of lupus and seek medical evaluation if they suspect their child may have the condition. A multidisciplinary approach involving pediatric rheumatologists, nephrologists, dermatologists, and other specialists is essential for comprehensive care.
Living with Lupus: Tips for Parents and Caregivers
Caring for a child with lupus requires understanding, patience, and proactive management. Here are some practical tips for parents and caregivers:
- Educate Yourself and Your Child: Understanding lupus and its symptoms is crucial. Teach your child about their condition in an age-appropriate way, empowering them to take an active role in their care.
- Adhere to Treatment Plans: Ensure your child takes their medications as prescribed and attends all medical appointments. Regular monitoring is essential to manage the disease effectively.
- Promote a Healthy Lifestyle: Encourage a balanced diet, regular physical activity, and sufficient rest. Avoid sun exposure by using sunscreen and protective clothing.
- Support Emotional Well-being: Living with a chronic illness can be emotionally challenging. Provide emotional support, encourage open communication, and consider seeking counseling or joining support groups.
- Coordinate with School: Work with your child’s school to accommodate their needs, such as allowing rest periods, managing absences, and providing a supportive learning environment.
At Hope Arthritis Foundation, we are dedicated to improving the quality of care for children and youth with rheumatological diseases through training programs for parents and healthcare professionals. Our mission is to ensure that every child with rheumatic disease thrives.
Visit our website hopearthritisfoundation.com to learn how to identify and manage the top four conditions in pediatric rheumatology:
- Juvenile Idiopathic Arthritis (JIA)
- Systemic Lupus Erythematosus (SLE)
- Juvenile Dermatomyositis (JDM)
- Vasculitis
By investing in the education and training of healthcare workers, we aim to make a lasting impact on the lives of countless children and their families. Become a part of this vital mission today.