Living on the Edge of Something: Irantzu's Story and Her Life-Threatening Asthma

Irantzu Muerza 's life is marked by the condition that has required her to be intubated three times in just one year. Something as mundane and routine as taking a shower can be a struggle, and she sometimes needs to take long breaks to catch her breath. She also receives comprehensive treatment that includes a variety of medications that she considers essential. She is corticosteroid-dependent ; without them, she would be unable to breathe. She receives nebulizers, uses rescue and treatment inhalers, and has begun biological treatment.

Muerza suffers from severe, life-threatening asthma that is difficult to control . In Spain , more than two million people suffer from asthma , of which around 4% live with severe, poorly controlled forms. "Living with it is, without a doubt, a challenge that involves facing the constant fear of attacks and their consequences. The unpredictable nature of the disease means that each day is lived with agonizing uncertainty , since it is impossible to predict when, how, or under what circumstances a severe asthma attack might arise, which, in extreme cases, could be life-threatening," says Muerza, who is president of Asmabi Euskadi.

The limitations of this serious condition affect numerous aspects of life , such as personal hygiene, household cleaning, and work activities. Social life is also affected, as people need to avoid triggers for crises , so they may avoid certain environments: "Planning becomes an exercise in anticipation, in which it is crucial to know the environments in advance and ensure they are safe."

All of this also has implications for emotional health , as the National Asthma Coordinator of the Spanish Federation of Associations of Allergy and Respiratory Disease Patients ( Fenaer ) points out. "The emotional strain that comes from dealing with a chronic and serious illness can be significant, generating anxiety , depression, and even hopelessness," she says. The Health Observatory (OdS) details, in a publication on severe asthma in Spain for World Asthma Day commemorating the disease, that 40% and 28% suffer from anxiety and depression , respectively.

Healthcare costs of severe asthma

Beyond the costs to the patient, this condition leaves a mark on the healthcare system. The aforementioned report indicates that the indirect cost of severe asthma is estimated between €600 million and €2.7 billion , and that in poorly controlled patients, healthcare costs can increase fourfold.

On the occasion of World Asthma Day, which is commemorated this Tuesday, specialists from the National Institute of Severe Asthma (INAG) have addressed this issue. Marina Blanco , a pulmonologist at the University Hospital of A Coruña and coordinator of the Severe Asthma Unit at the hospital, raises the prevalence percentage at 5% to 10% of people with asthma, " accounting for approximately 50% of pharmaceutical expenditure and high consumption of healthcare resources," due to the fact that they require several medications at high doses, and, in many cases, daily treatment with oral glucocorticoids, with side effects.

Muerza is aware of the side effects that can come with the use of the corticosteroids she must take, but they are "crucial" for her respiratory well-being. "In short, my treatment is primarily based on corticosteroids, and although they have their drawbacks, they are essential for my quality of life," she explains.

The INAG (National Institute of Aging) emphasizes the role of severe asthma units. There are 89 in total in Spain, and experts maintain that they allow for accurate diagnosis, among other things. Muerza had to wait until 2018 to get a name for what she was suffering from: "My life changed drastically. This diagnosis was a real shock, as it occurred after being admitted to the Intensive Care Unit (ICU) following a severe asthma attack . Until then, I had been underdiagnosed, unaware of the seriousness of my condition."

In her case, it was at her first appointment with her pulmonologist , but after 20 years of living with asthma. "When I finally received the diagnosis, I faced the harsh reality that My asthma had progressed to severe, life-threatening asthma. This revelation was overwhelming and made me reflect on how dangerous a late diagnosis can be . An earlier diagnosis would likely have saved me from many of the debilitating symptoms I now experience, as well as the severe flare-ups that have defined my life," she says.

The ODS points out that underdiagnosis in Spain accounts for between 20 and 73% of cases . "Early detection of the disease is essential. An early diagnosis can prevent the progression to severe, difficult-to-control asthma, allowing the disease to be kept at mild or moderate levels," it asserts.

Muerza, therefore, knew for decades that she suffered from asthma , but not that it would develop into a severe condition. This patient explains that the main difference between the two lies in the intensity of the symptoms and the management of the disease.

In mild or conventional asthma, patients can control their symptoms with basic treatment , which generally includes occasional medications and, in some cases, preventative treatment. In severe asthma, patients often require a much more intensive and extensive regimen of medications to control the disease, and despite following instructions, they may experience frequent attacks and exacerbations, with the associated high risk of complications. The second distinguishing factor lies in the "medication burden."

How can the lives of these patients be improved?

To improve patients' lives, Muerza lists a series of feasible measures, although it all boils down to putting information, training, and education first and foremost in all aspects , both for society in general and for the person's environment, so they know how to react during a severe asthma attack. This equation also includes the patients themselves and the specialists who treat the condition.

On the other hand, he emphasizes the need for holistic care , including issues such as respiratory physiotherapy and psychological support. "Addressing severe asthma requires a multidisciplinary approach, including lifestyle changes and proper adherence to treatment," he concludes.