מונע על ידי תקווה: התגברות על אתגרים כמדען חולה CF

From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s guest is Miriam Figueira, a 30 year-old CF scientist AND patient, completing a postdoctoral fellowship at the University of North Carolina, under EE Grant Recipient Robert Tarran. Fueled by hope (and scientific progress), Miriam reminds us why desperation can be the key to finding a cure.

My name is Miriam, and I am a 30 year old “CF-er” from Brazil, Rio de Janeiro. I was only diagnosed with Cystic Fibrosis (CF) at the age of 13 and since then I have been living my life knowing the real meaning of the word hope. It was my parents who, shortly after the impact of my diagnosis, taught me to have hope. They taught me specifically that many scientists were working to help people with CF.

Miriam and her mom.

That seed of hope made me believe in scientific research and made me want to know more about science. Realizing the importance of the hope in my life has made me want to be part of the hope in other people’s lives.

Over time, this feeling of hope and curiosity helped determine the course of my professional career. I decided to become a scientist. I completed my undergraduate studies in Biomedical Science, obtained a Master’s and PhD degree in Biological Science (Physiology) and I now am completing my Postdoctoral work focused on CF.

Throughout my career, I have been working on scientific research related to diabetes, kidney disease and Cystic Fibrosis.It wasn’t until I pursued my career in academic science that I realized how hard this career path can be. It requires demanding mental resilience to take numerous stressful tests and endure the competition in the field, for example. But there’s an additional layer for me. In my case, these professional challenges coexist with the emotional roller-coaster of working so close to your own disease, and the doubt of whether I can keep up with both a demanding career and my own health care.

But there’s an additional layer for me. In my case, these professional challenges coexist with the emotional roller-coaster of working so close to your own disease, and the doubt of whether I can keep up with both a demanding career and my own health care.

When I´m in the lab or in a lab meeting, sometimes I need to dissociate the patient in me from the scientist in me, but many times it is actually the patient in me that gives me the right fuel and inspiration to keep going with my career.  Also, meeting other CF scientists is my favorite hobby, which makes me think that despite the challenges, I am, indeed, right where I should be!

Like many with CF, Miriam balances a demanding career and healthcare regiment.

Emily´s Entourage (EE) entered my life through social media and I instantly related. I cried while watching the videos and at the same time was fascinated by this powerful Entourage.

Like Emily, I also have rare and severe mutations of CF and the existing potentiator and corrector medications that are approved for other mutations are not yet a possibility for me. This can foster a feeling of powerlessness and a sensation of being left behind, however EE has come to represent exactly the opposite for me! EE represents the role patients and their relatives can have on changing history, and changing it for everyone with CF, even for us—the rare patients among this rare disease.

EE represents the role patients and their relatives can have on changing history, and changing it for everyone with CF, even for us—the rare patients among this rare disease.

In an unpredictable and ironic turn of events, I will have the opportunity to work on projects directly funded by EE as a postdoctoral fellow at the University of North Carolina. I will be even closer to helping more people with CF. My strong empathy for EE’s mission will push me to do the best work possible and I believe that navigating in both the patient and scientist worlds will give me a broad perspective and even greater chance for meaningful impact. 

Miriam in the mountains of Brazil.

I’m beyond ecstatic to be part of Team EE and my wish is that the flame of hope keeps shining bright for everyone with CF!