Systemic Lupus Erythematosus (SLE), commonly known as lupus, is a chronic autoimmune disease that can cause widespread inflammation and tissue damage. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. While lupus is more prevalent in adults, children and adolescents can also be diagnosed with this condition. Early diagnosis and appropriate management are crucial to improving the quality of life for young patients with lupus.
My Journey with Lupus as a Pediatric Rheumatologist
My name is Dr. Angela Migowa. As I reflect on my journey as a pediatric rheumatologist, my first encounter with a pediatric lupus patient during my pediatric residency was the foundational seed that inspired me to pursue this specialty. I recall feeling perplexed and overwhelmed while caring for the patient, and I realize now that many children, guardians, and healthcare workers still experience the same sentiments. This early experience fueled my passion for understanding and treating lupus in children, and it continues to drive my dedication to this field.
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 the disease onset during their childhood. In Kenya, it is estimated that for every 100,000 people, about 5,600 have lupus. Thus, we estimate that about 2.8 million people are suffering from lupus in Kenya, 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, even from the toddler age group.
Newborn children born to mothers who have lupus have up to a 20% risk of developing lupus. Therefore, it is crucial for women with lupus who aspire to be mothers to work closely with their rheumatologist and obstetrician to ensure the disease is well-controlled before conception.
Symptoms of SLE in Children and Youth
The symptoms of lupus can vary widely from person to person and may come and go in flares. Common symptoms in children and youth include:
- Fatigue
- Joint pain and swelling
- Skin rashes, particularly a butterfly-shaped rash across the cheeks and nose
- Fever
- Hair loss
- Sensitivity to sunlight
- Kidney problems
- Chest pain
- Mouth sores
- Swollen lymph nodes
Diagnosis of SLE in Children
Diagnosing lupus in children can be challenging due to the variability of symptoms and their overlap with other conditions. A comprehensive medical history, physical examination, and a combination of blood tests (such as ANA, anti-dsDNA, and anti-Smith antibodies) and imaging studies are typically used to confirm the diagnosis.
Treatment and Management of SLE
The management of lupus in children involves a multidisciplinary approach to control symptoms, prevent flares, and minimize organ damage. Treatment options include:
- Medications: Nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, antimalarials (such as hydroxychloroquine), and immunosuppressive drugs.
- Lifestyle Modifications: A balanced diet, regular exercise, and avoiding sun exposure.
- Regular Monitoring: Frequent check-ups with a pediatric rheumatologist and other specialists to monitor disease activity and manage complications.
Case Study 1: John’s Journey with Lupus
John, a 14-year-old boy, was diagnosed with lupus after experiencing persistent fatigue, joint pain, and a distinctive butterfly-shaped rash on his face. Initially, John’s symptoms were attributed to growing pains and common childhood ailments. However, as his symptoms worsened, his parents sought further medical evaluation.
John’s rheumatologist conducted a series of tests, including blood work and a skin biopsy, which confirmed the diagnosis of SLE. John’s treatment plan included a combination of medications to control inflammation and suppress his overactive immune system. His parents were educated about the importance of sun protection and ensuring John adhered to his medication regimen.
Over time, John learned to manage his condition with the support of his family and healthcare team. He joined a local support group for teens with autoimmune diseases, where he found comfort and camaraderie. Today, John is an active high school student who enjoys playing basketball and is determined to not let lupus define his life.
Case Study 2: Jane’s Experience with Lupus
Jane, a 16-year-old girl, began experiencing unexplained weight loss, severe fatigue, and recurrent mouth sores. Her pediatrician initially suspected a viral infection, but when Jane developed significant joint pain and swelling, she was referred to a pediatric rheumatologist.
Jane underwent extensive testing, including a kidney biopsy, which revealed lupus nephritis, a serious complication of lupus affecting the kidneys. Her treatment included high-dose corticosteroids and immunosuppressive medications to control the inflammation and protect her kidney function.
Jane’s family played a crucial role in her care, ensuring she attended all medical appointments and adhered to her treatment plan. They also sought psychological support for Jane to help her cope with the emotional challenges of living with a chronic illness. With the right medical care and family support, Jane’s condition stabilized, and she is now pursuing her passion for art and dreams of becoming a graphic designer.
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.