Nathalie Harris was diagnosed with lupus 13 years ago. Earlier he had many symptoms like excessive hair fall and weight loss. “In three or four months, I lost about 30 pounds. I couldn’t eat, I was vomiting every day and I had a 40 degree fever every day. All I did was suck ice, even as I got wounds on my head. Symptoms persist day after day. Finally, I went to look for doctors and they completely dismissed me.
Worldwide, approximately five million people have some form of lupus and its estimated prevalence in Latin America is approximately 72 cases per 100,000 inhabitants, with approximately 90% of diagnosed patients being women. The most common type is known as systemic lupus erythematosus (SLE), which affects the vital organs, the heart, kidneys or lungs, as well as the skin and joints.
Harris had to undergo various tests “because it’s not like taking an HIV test and getting results immediately. Those are special tests that were not done at that time. I spent about nine months this way until it was determined that I had systemic lupus erythematosus. I started treatment, which eventually reduced the fever and stopped vomiting, meaning my condition began to stabilize.”
When it was diagnosed, a process of physical and emotional restructuring began. “It was quite complicated. It is not easy for a person whose face is completely scarred, whose hair has receded, who has gained a lot of weight and who is on the verge of death, to try to get well again. “It was a challenge, but not impossible.”
The complexity of this pathology and its variability among patients have long limited the development of treatments; However, in recent years, advances in the understanding of the disease and the urgency of the need for new options for innovative treatments have helped. Safnello (anifrolumab), is the first biologic therapy approved in Central America and the Caribbean for the treatment of this disorder.
This medicine will help adult patients with moderate or severe SLE who are taking other medicines to treat the disease. The results of various clinical studies highlighted the effectiveness of the new treatment compared to other existing treatments, showing that at least 53% of patients using Safnello experienced a reduction in disease activity.
“It is a human monoclonal antibody that blocks signals related to type 1 interferon, which reduces inflammation and autoimmune processes that cause disease and damage organs. This molecule has been shown to reduce or improve musculoskeletal, joint, constitutional, cardiovascular, pulmonary, gastrointestinal and even central nervous system symptoms, helping to improve patients’ quality of life, “Rheumatologist Edgardo Gonzalez explained this.
According to the expert, the drug is also currently being studied in renal manifestations such as lupus nephritis, “which affects many patients with lupus and is one of the most feared complications by rheumatologists.” “This therapy has become a new tool in our therapeutic arsenal, which has a promising impact on the quality of life of patients with this devastating disease.”
The studies that led to the approval of this drug were conducted internationally, primarily in various parts of Europe, North America, and South America. They demonstrated their effectiveness and received their approval by organizations such as the FDA. The drug has received its approval and its marketing will start from next November.
Lupus is a very complex disease involving genetic, hormonal, environmental factors, viral infections, smoking, and individual factors related to altered immune systems. This may lead to disease developing at some point.
“It is an autoimmune disease, that is, the body, for a reason that we still don’t know about, starts attacking different parts of the body. It is long-term, because it lasts more than six weeks, and it is a disease that you have to learn to live with, because there is no cure,” Gonzalez explained.
He said it is inflammatory and multisystemic. “When we talk about multisystem, we mean that it affects multiple organs. As I usually explain to patients with this disease, it can affect everything from hair to feet, in other words, any part of the body that is in its path. The affected organs include hair, eyes, mouth, skin, heart, kidneys, lungs, brain and all other organs.
Harris, who is also the director of the Panamanian Lupus Association, learned to live with the disease. “The person lives with constant pain day after day, at least in my case, this was the biggest impact. Every day I feel pain. It is difficult to do simple tasks like squeezing a lemon. Changing my clothes is a challenge because I can’t do it alone. Even sometimes it is difficult to maintain focus, I forget simple words.
“It’s also complicated how people see you. Suddenly they tell you that you are too distracted or you don’t want to cooperate, like you don’t want to dance or do things like that, but I am going through pain. The person learns to live and live with lupus. It’s a matter of care and approach, eating well, taking medications correctly, and that gives you better anticipation and life expectancy,” Harris said.
emotional and social impact
“At first I didn’t handle the emotional part. It is important for people to know this. It was hard for me and sometimes it’s still hard for me to live with this disease because it feels incredible how much it limits you in things that seem insignificant, but at the end of the day they are not, Like when I drop the remote control and I can’t bend over to pick it up.”, the television presenter also revealed.
For him it was a process to get out of the depression caused by the disease. “At some point, I was prescribed antidepressants. I tried to find a way to work on my happiness, and it’s a daily task. “I encourage patients to seek psychological help, whether they have lupus or another chronic disease or any type of condition.”
From the Panamanian Lupus Association, they provide education to patients. “Knowledge is power and it is essential that the patient knows what they have, why they have it and how to deal with the condition. The director shared, “We’re here to be able to explain in more detail, because for example, a patient may see his or her doctor every six months, and he or she may have gone through a lot in that time. yes.”
Additionally, the Foundation is working on obtaining a functional census of how many patients there are, as this data does not exist. “As president of the Rare Diseases Association of Panama, we are working on public policies so that these patients can receive appropriate medicine. “This has been a somewhat long, tedious and highly political process,” Harris said.
Rheumatologist Gonzalez said that “in the country, there is a need for publicity campaigns to increase awareness among the population about the disease and its symptoms. Training is essential, and I think we have made great progress through the Panamanian Society of Rheumatology and general practitioners in identifying symptoms in patients and referring them early to provide treatment options.