“We don’t want to be limited although cystic fibrosis exists. It’s a complicated disease… but it’s important. A lot of people struggle with it every day and it deserves the attention that it doesn’t get.”
Montse Mora had been planning to become a teacher since she was ten years-old. Soon after turning ten, Montse and her family were puzzled by the hour-long coughing fits Montse experienced every morning and began to question her mysterious medical condition. Two years of seeing doctors with no conclusive answer later, Montse finally received her diagnosis at a hospital in Mexico City specializing in respiratory diseases—it was cystic fibrosis.
“A doctor saw me, I told her my symptoms and she said, ‘It’s cystic fibrosis. Go to the Cystic Fibrosis Foundation here in Mexico to get tested and then come back,’” Montse describes receiving her diagnosis preceding a month-long hospitalization after the discovery of multiple infections colonizing her lungs. “I had two infections in my lungs. Staph and Pseudomonas and I understand how the bacteria protect themselves and have mechanisms to fight antibiotics. And I understand how they can mutate and the antibiotic won’t kill them.” From CF-related and antibiotic-resistant bacteria, Montse has gained 20 pounds and has been hospitalized four times.
Montse’s fascination with genetics and curiosity about her disease inspire her to research CF in hopes of finding a better way to treat antibiotic resistance. Montse, now 20, is pursuing an undergraduate degree in Biotechnology at Tecnológico de Monterrey, and plans to attain a PhD shortly afterwards. Intrigued by scientific research on genes, mutations and genetic diseases, Montse spends her time reading and investigating scientific articles to further her understanding of CF.
Cystic fibrosis is not the only disease that Montse’s family cares for. Irais, Montse’s mother battles Multiple Sclerosis. Despite the challenges her family faces, she draws a wealth of love and support from them in making her own life better. Montse has always had a strong backing of her family which supports her choice to pursue education, seek always better and new treatments and make ambitious plans for her future, which might be due also to their engineering background. Montse’s sister, Irais, enlightens her, “No you don’t have to be limited. You can do things, if you are taking care [of yourself] you can absolutely do things.” Irais helps provide prospective on Montse’s life with CF and how its shaped Montse as a resilient fighter by assuring her: “If it weren’t for CF, you wouldn’t be majoring in what you’re majoring in.”
“In Mexico, the disease is very unknown so doctors don’t know how to treat it… life expectancy here in Mexico is 18 years , half of the US life expectancy,” Montse informs us of the variance in life expectancies of people with CF from different countries. “And it touches my heart because a lot of kids die and they don’t know why.”
The drastic difference in life expectancies between the US and Mexico are caused by lack of access to viable clinics, late diagnoses, insufficient treatments, expensive treatments, and unobtainable medical equipment impeding proper medical care. Montse informs us of the lengths she has traveled (literally) to attain her medicines and medical equipment—traveling to the United States to pay out-of-pocket for her respiratory vest that was unavailable in Mexico and employing an at-home nurse to assist in her oxygen and IV treatments.
When it comes to managing her illness, Montse describes the disease as an interruption on her life. “When you get sick, you don’t get to continue with your life. You cannot take vacations from your treatments.” Life doesn’t stop for CF, as Montse explains that every CF fighter will attempt to evade the limitations CF puts on them. “We don’t want to be limited although CF exists. It’s a complicated disease… but it’s important. A lot of people struggle with it every day and it deserves the attention that it doesn’t get.”
Montse faces adversity through strength and it is the force behind her drive to spread awareness on CF and make her contribution. “I want to make a difference. Even with one person, if you can impact the life of one person, good your job is done. I’d really like to do that.” After getting very sick last year, Montse decided to be vocal on social media and start spreading awareness on issues impacting the CF Community. She began investigating conditions in Mexico for the CF community and began to post on Facebook, share videos and share her concerns on the miseducation about the sickness. “On Facebook I share and I am always trying to raise awareness. Before I wouldn’t post but now it’s very important to me.”
A message Montse would like to send to her fellow CF fighters is, “Don’t be afraid and follow your treatments. Try to live fully and try to enjoy everything. You are not alone and you have to fight to get the best medical assistance you can get, because you deserve it. You deserve the best medical attention and you should have it.”
Montse’s passion to help those with her disease as well as her perseverance to investigate CF and live independently make Montse a relentless leader in the CF community and we look forward to seeing all that she will accomplish.