Mexico's Lupus Registry Reveals Surprising Insights

Two years after the initiation of the Mexican Lupus Registry, a research project led by the National University, the collection of clinical and sociodemographic information on individuals with lupus has been ongoing. Ana Laura Hernández Ledesma, a member of the International Laboratory for Human Genome Research at the National Autonomous University of Mexico (UNAM), located in Juriquilla, Querétaro, reports that there are approximately 2,000 registered patients from all states of the country.

The registry was established due to the need for a comprehensive database. Initially, the goal was to analyze the genetic variants associated with lupus in the Mexican population. However, researchers discovered a scarcity of data regarding individuals suffering from the disease in Mexico. Consequently, the project addressed this gap by identifying and collecting information about lupus patients, including their demographics, characteristics, and requirements.

Currently, the registry has brought together around 2,000 patients, primarily from central regions of the country, such as Mexico City, the State of Mexico, Morelos, and Querétaro. According to Hernández Ledesma, the registry has provided valuable insights and increased understanding of this population.

The Lupus Registry is an online platform consisting of various questionnaires designed to explore different aspects of the lives of lupus patients. The questionnaires cover sociodemographic variables (e.g., age, occupation, education level) and clinical data (e.g., medication usage, dosage, duration, and physical and psychosocial manifestations such as depression and anxiety). By analyzing this information, the research team identifies different characteristics, such as the average age of patients being 36 years old, although the age range spans from 18 to 79 years. Additionally, the team works with healthy individuals to establish a basis for comparison and determine the impact on their quality of life.

The registry continues to receive data from more lupus patients who voluntarily share their information. Currently, two genetic analysis projects are underway. The first project involves the analysis of genetic variants related to the tolerance process in 30 patients from the city of Querétaro who provided voluntary samples. The aim is to investigate the immune system's ability to differentiate between self and non-self and determine what can cause harm. Initial results from this project are expected by the end of the year.

Simultaneously, the registry collaborates with the Jaguar project, collecting samples from healthy individuals and those with lupus. This initiative focuses on identifying genetic variants in immune system cells. Currently, 31 individuals with lupus and 36 healthy individuals have participated. Shortly, magnetic resonance imaging will be conducted to examine nervous system impairments and explore neurolupus.

The research team receives support from various national and international institutions, including the Institute of Neurobiology and the Faculty of Psychology at UNAM, regional hospitals 1 and 2 of the Mexican Social Security Institute (IMSS) in Querétaro, the National Institute of Medical Sciences and Nutrition Salvador Zubirán, the National Laboratory of Genomics for Biodiversity (LANGEBIO) at the Center for Research and Advanced Studies of the National Polytechnic Institute (IPN), Brigham and Women's Hospital of Harvard Medical School, and the Wellcome Sanger Institute in the United Kingdom.

Ana Hernández emphasizes the importance of raising awareness about the disease. Doctors, scientists, family members, and society must improve communication to enhance understanding of the disease and provide better prospects for diagnosis, treatment, and quality of life for patients. She encourages patients to join the Lupus Registry (available at https://lupusrgmx.liigh.unam.mx/) and stay connected through social networks.

Understanding Lupus

Lupus is a rare chronic autoimmune disease characterized by an unbalanced immune system that produces antibodies attacking healthy tissues and organs. It predominantly affects the skin, joints, kidneys, brain, heart, and lungs. Although therapies exist to manage symptoms, lupus is an incurable condition, according to the Lupus Foundation of America.

The prevalence of lupus globally is estimated to be 40 to 100 cases per 100,000 people, as cited by the International Medical Organization, making it a significant global health issue. In Mexico, estimates vary from 20 to 90 cases per 100,000 people based on studies conducted in specific regions like Nuevo Leon.

The immune system's normal function is to protect the body from external threats like viruses and bacteria. However, in autoimmune diseases like lupus, the immune system loses its ability to differentiate between self and non-self, leading it to attack healthy components of the body. This phenomenon contributes to approximately 80 different autoimmune diseases, including lupus. The term "lupus" is derived from Latin and means "wolf."

Lupus can cause extensive damage to various parts of the body, including the skin, heart, nervous system, and kidneys. Systemic lupus erythematosus, as its name suggests, affects multiple organs.

The exact causes of lupus are unknown, but it is believed that a combination of genetic, environmental, and social factors increases the likelihood of developing the disease. Furthermore, lupus predominantly affects women, with a ratio of nine women to every man. Hormonal factors and genetic factors associated with the X chromosome, of which women have two copies compared to men's one, may contribute to this gender disparity. Certain populations, such as those with Latin or Asian ancestry, have been found to have a higher risk of developing lupus.

Lupus symptoms and manifestations can vary significantly from one patient to another, as the immune system can target almost any cell or body part. Common symptoms include extreme fatigue, headaches, joint pain or inflammation, fever, and a characteristic rash resembling butterfly wings across the cheeks and nose.

Diagnosis and management of lupus can be challenging due to the diversity of symptoms. Some individuals receive a diagnosis within six months of their initial symptoms, while others may endure a prolonged diagnostic journey lasting years.

Treatment aims to control the immune response and typically involves the use of medications such as glucocorticoids and antimalarials, as explained by Hernández Ledesma.