Taking Control of Her Disease: Miriam Figueira earns PhD after researching her own disease


Brazil

“I was always interested in science, as a curious person and hearing that the current available medicine doesn’t have an answer for me but science could have and specially, could give me hope … I decided I’d like to be a scientist and be part of the hope in other people´s lives.”

 

Her interest in cystic fibrosis and tireless desire to learn about her own CF motivated Dr. Miriam Figueira to earn her PhD in the field of CF research.  “She is a double agent since [she is] both a CF researcher and [has] CF herself,” Miriam’s father, Ivan Figueira, would joke. Science has given Dr. Figueira an outlet to research, understand, and cope with her complex illness.

Miriam presenting her Doctoral Dissertation for her PhD at the Federal University of Rio de Janeiro (“Universidade Federal do Rio de Janeiro” in Portuguese).

“I was always interested in science, as a curious person and hearing that the current available medicine doesn’t have an answer for me but science could have and especially, could give me hope … I decided I’d like to be a scientist and be part of the hope in other people’s lives,” Miriam’s eyes lit up while describing her passion to use science to help the CF community through research.

Born in Rio de Janeiro, Miriam was unaware of her condition until her late diagnosis at 13-years-old. “A late diagnosis with CF is common here. It’s an under-diagnosed disease here and the screening tests with newborns are still problematic,” Miriam explained how her late diagnosis is not uncommon among Brazil, although the country is ranked seventh on the list of countries with the highest number of CF patients, with 3,511 cases reported in 2016.

Miriam informs us that her parents are her biggest support system and are very proactive helping with daily treatments as well as fighting for access for her medical treatments. Science has always been a part of her life as the pathway to receiving her doctorate was originally inspired by her parents who have both trained in sciences: her mother, Viviane, is a psychoanalyst and one of the directors of Associação Carioca de Assitência a Mucovicidose (ACAM-RJ) group and her father, Ivan Figueira, is a Psychiatrist and Professor of Psychiatry.

(Left to right) Miriam above with her mother, Viviane, and brother, Alexandre, as they attend the Fibra run for CF.

Both her mother and her father fought for crucial medical treatments in Brazil for their daughter’s health and the Brazilian CF community through Viviane’s legal battles as a director of ACAM-RJ group and Ivan’s international connections with medical professionals abroad. With her parents’ endless support, Miriam has received access to new medical treatments fundamental to her current wellbeing.

Miriam above with her father, Ivan, who she describes both of her parents being her strongest support system.

Miriam expresses her admiration for CF awareness’ globalization through social media: “I remember when social media started to grow I was 17-years-old. It helps people to communicate and to form groups to fight together and it has helped me a lot. Being able to read other people’s histories helps me to cope with my own struggles.”

Miriam worked in the lab studying CF to directly impact & improve scientific research of her own disease.

“I needed to do my Master’s entrance exams and [those] were for 3 days and would take 6 hours each one, meanwhile I was doing IV at that point and my IV thing was every eight hours… So, I had to coordinate my exams time schedule with my IV-time schedule,” Miriam explains the stressful push-pull between her academic career and medical condition. Despite these difficulties, Miriam drew inspiration from CF patients, relatives and the CF community and successfully completed her PhD.

CF does not rest for anyone. Miriam, above, on IV treatments and completing nebulizer treatments while working through academics to earn her PhD.

From March of 2015 to 2016, Miriam completed research as a visiting student researcher at Stanford University’s Cystic Fibrosis Research Lab before returning to her home country to complete her Doctoral Dissertation. In July 2017, she received her PhD at the Federal University of Rio de Janeiro (“Universidade Federal do Rio de Janeiro” in Portuguese).

Miriam dedicates her Doctoral Dissertation to those among the CF Community fighting this disease.
After completion of her Doctoral Dissertation, Miriam’s post shows the nebulizer treatments, she’d often undergone on her desk next to an energy drink, as they helped her receive her PhD.

Miriam spreads awareness and knowledge about CF through her blog, Not Leaving Anyone Behind – Cystic Fibrosis, where she posts information on valuable and helpful treatments for both CF patients with rare mutations and common mutations alike. She hopes through her blog and her Instagram @CFScience, she draws interest to research in this field through raising awareness and sharing information with the CF community.

Miriam spreads awareness of CF in hopes of negating the stigma and the lack of knowledge surrounding it. She explains, “I’m in a place with a lot of people, [I think] how much am I coughing? While I really understand CF is not contagious I always worry that people may think it is and that I am contagious because I´m coughing a lot. It´s a daily struggle.”

Miriam campaigns for clinical trials and crucial medicine for the CF community.

Currently, Miriam is a scientific writer for non-profit organization, United for Life, which is the largest NPO in Brazil responsible for spreading awareness for CF. Through educating others, she hopes that she can increase interest in researching the disease and advance treatments and therapies.

“I hope to get more people interested in CF and wish we could have a more closer interaction between patients and Scientists. My goal is to make more people interested in studying and researching CF… all because we still really need a lot of improvements to happen.”

Miriam at an ACAM-RJ CF awareness event where they gathered in the street to walk and inform people about CF symptoms.

Miriam is involved with ACAM-RJ “Associação Carioca de Assitência a Mucovicidose” and the Institute United for Life “Instituto Unidos pela vida – Fibrose Cistica.” which are mostly funded by donors. You can support these organizations through donating at the following sites:
ACAM-RJ: “Associação Carioca de Assitência a Mucovicidose”: http://acamrj.org.br/
Institute United for life: “Instituto Unidos pela Vida – Fibrose Cística”: http://unidospelavida.org.br/

For more on Miriam you can follow her pursuits here:

 

Source(s):
Lopes-Pacheco, M. (2016). CFTR Modulators: Shedding Light on Precision Medicine for Cystic Fibrosis. Frontiers in Pharmacology, 7, 275. http://doi.org/10.3389/fphar.2016.00275