Voices of resilience: patient narratives in the fight against AMR

November 20, 2023

On the occasion of the European Antibiotic Awareness Day (EAAD) and the World Antimicrobial Resistance (AMR) Awareness Week (WAAW) 2023, we collected the stories of three AMR patients from our network. Their stories share their perspectives, emotions, and invite us all to reflect on the impact of antimicrobial resistance on our lives and the lives of our families. Faced with the fight against resistant bacteria, Iñaki, Sonia, and Guillem explain their stories of resilience in the face of obstacles and limitations caused by resistant bacteria.

Iñaki Morán - Founder and President of EPOC ESPAÑA 

I am a bipulmonary transplant recipient due to a chronic and incapacitating respiratory pathology (COPD), which affects about 3 million people in Spain. Living with a chronic respiratory disease means I experience constant ups and downs, not only in my respiratory system but also in my emotional well-being. 

I was diagnosed with COPD in 2008, even though I had never smoked. Since 2013 until my transplant in 2019, I was forced to fight against COPD and add another challenge: antimicrobial resistance (AMR). 

The truth is that initially I did not give it much importance, although later AMR ended up becoming the cause of countless exacerbations, hospital admissions, home hospitalizations, and accelerated loss of lung capacity. 

I have suffered from stenotrophomonas maltophilia, pseudomonas aeruginosa, achromobacter xylosoxidans - all multiresistant bacteria that made my life tremendously difficult during those years, due to the deterioration of my health and how it affected me and my family emotionally. 

Honestly, I don’t even remember the number of admissions and hospitalizations, but I do remember the constant feeling of helplessness due to the appearance and reappearance of infections.  

Respiratory patients are particularly harmed by respiratory infections, especially when it comes to resistant bacteria forcing patients to undergo harsh antibiotic treatment every time the colony reactivates.  

Antimicrobial resistance is the cause of 35,000 deaths per year in Europe.  

I have had the immense fortune of receiving a second chance, and from my privileged position, I would like to say that winning the battle against superbugs shouldn’t be a question of being fortunate. Not even the result of living in a country with access to surgical interventions such as the one that saved my life. We need to invest more in research, education, training, prevention, and best practices in hospitals and at home to protect ourselves from infections caused by viruses, bacteria, fungi, or parasites. 

AMR is a global problem that requires global solutions. 

Sonia Sánchez - AMR Patient from Spain 

My journey began around the age of 36 when I noticed increased fatigue while playing or running after my 4-year-old daughter.  As a smoker since my youth, coupled with poorly managed bronchitis that eventually became chronic, I decided to consult a pulmonologist at the age of 38. At first, he attributed my symptoms to smoking without much concern. 

Four years later, I switched pulmonologists and underwent necessary tests, revealing a diagnosis of moderate/severe COPD, leaning more towards the severe end. Despite my attempts, quitting smoking remained a struggle, leading to 10 to 12 relapses annually with the need for antibiotics. 

In 2008, after successfully abstaining from smoking for six months, the sudden death of my mother caused a relapse. This time, quitting smoking was particularly challenging, leading to the development of severe COPD. After enduring years of waiting, including a battle with cancer, I reached 2021 when I underwent a bipulmonary transplant with only 17% lung capacity.  

I caught a resistant bacterium in the operating room during my transplant. I spent a whole month on antibiotics to get rid of it. 

The thing that scared me the most was that life is put on hold while the drugs you are being given by medical professionals and exert are ineffective. It is true that AMR patients frequently experience a sense of guilt and helplessness, making the fight a difficult journey.  

This is exactly why patient associations are fundamental for support and informational network. There is a need for a greater involvement of the community to raise awareness about antimicrobial resistance and its risks to local communities. The support they can provide for patients for me, the feeling to be understand, and the network they can provide are invaluable for patients like me. 

Overall, the two years post-transplant have brought about a radical transformation in my life. It has been the best thing that could have happened to me. 

Guillem Cuartero - AMR Patient from Spain 

When I was 19 years old, I contracted severe mononucleosis, and the infection originated in my right angina.  

I was placed in an induced coma for 52 days and underwent multiple surgeries, narrowly avoiding the loss of my right arm. Additionally, I developed thrombosis in my left leg, resulting in lasting effects. The surgeries left me with scars from burns, and I now have a 56% physical disability. 

For 8 months, I underwent daily rehabilitation, working 5 hours a day, until I could walk again and resume my life. Although I cannot make up for the time I spent in a coma, I am still persevering. 

Recently, I faced hospitalization due to phlebitis in the affected leg. A virus resembling insect bites manifested on my skin, with one of them becoming infected, allowing the virus to enter and cause an infection. Fortunately, I am now on the path to recovery and resuming my daily life. 

This experience has taught me the critical lesson of never letting one's guard down. Any infection, regardless of its apparent insignificance, should be promptly addressed and evaluated by a medical professional

I extend my greetings and encouragement to all those who have undergone similar unfortunate experiences. 

The European AMR Patients Group would like to thank Iñaki, Sonia, and Guillem for sharing their personal stories and the impact that AMR had on their lives and the lives of their loved ones. We would also like to express our gratitude to EPOC España for their broader support in our work.

Please find here our digital awareness campaign in occasion of the EAAD and WAAW 2023.

Don’t hesitate to contact us at: secretariat@healthfirsteurope.org