As an adult woman of color living with cystic fibrosis, I have been able to witness so much advancement in science that has not only enabled me to live longer, but rethink my desires and goals in life, such as becoming a mother. This year’s North American Cystic Fibrosis Conference solidified and celebrated a lot of that advancement, but also succeeded in highlighting what is left to be done, including continued research into infections, highlighted in Plenary 2, “Micro-Management: The Changing Face of CF Infection.
When I first found out I was pregnant, I was completely overjoyed and overwhelmed. I had been convinced I was not able to have children. And if by some slim chance I did become pregnant, I might be in a situation where I would have to choose between saving my own life or that of my child. Despite coming very close to that reality, I gave birth to my baby girl in 2015, though it was not without its complications.
During the pregnancy, I developed gestational diabetes, and my lung function took a dive as I spent a month on bed rest and received IV antibiotics. I never imagined how many treatment options would be off the table for me in order to protect my child while pregnant. Recovering after childbirth was just as turbulent while having these same restrictions because I chose to breastfeed. I had to push very hard to pick up my physical activity and continue doing airway clearance to improve my lung function. Even though I’m taking Symdeko®, I have yet to get my FEV1 and blood sugar levels even close to where they were before pregnancy.
Like many of my peers, antibiotic resistance is a challenge for me as I have been unable to tolerate some of the stronger drugs and modulators on the market. As a wife, mother, and advocate, the struggles of infection get further compounded with age-related issues and the demands of everyday life.
I was thrilled to hear from Dr. Luke Hoffman of the University of Washington and Dr. Natalie West of Johns Hopkins University during Plenary 2.
I was excited to hear about culture testing, the ever-changing landscape of infection, and the present and future of testing in the community. I now have a better understanding of why, even with the best treatment course, improvement in lung function can be very minimal as the bacteria or pathogens mutate like an X-Men cartoon producing new characters every episode. I was happy to hear that there has been more support put into home sputum collection and that there is more emerging technology on the horizon in culturing that is more convenient and accurate than past methods.
I am especially excited because these are some of the programs I directly supported as a participant in a couple of research committees, whereby I've had an influence on the recommendation and approval of research grants affecting things like the remote testing mentioned in the presentation. I was able to participate in those committees through my involvement as a community advocate and advisor for the External Racial Justice Working Group, collaborating with Foundation staff to address the many barriers and challenges in healthcare equity for people of color.
Dr. West’s presentation really resonated with my experience of the effectiveness of antibiotics over long periods of time. I often experienced more off-target effects than lung function improvement after 10-14 days. As mentioned, it is extremely difficult to standardize treatments because the community varies tremendously. I am grateful to the research being done in infection and the outcomes of tailored treatment that has resulted.
The highlight of female pulmonary exacerbation outcomes being worse than males in the community was particularly disheartening. As a woman of color with CF, living in a low-income neighborhood, fighting for just health equity is a challenge. And now on a biological scale, I am still below the bar. Despite this, I welcome the awareness and have new lifestyle considerations when balancing hormones like estrogen as mentioned as one of the root causes for this disparity.
While there is an incredible number of things to be excited about, an equally important takeaway is all the work still left to be done and the continued commitment from many researchers and doctors to ensure that infections do not jeopardize the advancements that are already available to so many.
You can get the full story by watching the plenary session below.
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