Kevin Wohlers, adult with CF
As a CF adult who has had a lung transplant and serves on the Cystic Fibrosis Foundation’s Advanced CF Lung Disease Working Group, I was so encouraged by this year’s North American Cystic Fibrosis Conference (NACFC) program. I know first-hand how advanced lung disease can bring about tremendous life changes to your physical health, relationships, work and school, and deep emotions; all while facing difficult decisions, such as lung transplantation and potential end-of-life questions. CF patients with advanced lung disease often need immediate solutions to help cope with these changes. I was thrilled to view multiple sessions that addressed this need. Below are the sessions that stood out to me:
Lung Transplantation: Pre-Transplant Psychosocial Evaluation Best Practices provides tremendous insight into the transplant process, factors in transplant evaluation, how a patient can best prepare themselves, and ultimately aiding in the complex decision of whether transplant is the right option.
The Spectrum of Palliative Care: Providing a Lifetime of Relief from Symptoms & Stress of CF shows that palliative care is not reserved only for end-of-life situations. Early intervention of a palliative care specialist can greatly benefit patients and care teams alike as they navigate the challenges of advanced lung disease as a more cohesive, collaborative team. It was an incredibly moving session.
The three sessions below demonstrated the benefit to people with advanced lung disease directly through improved lung function and possible delay of transplant. They also provided indirect benefits, such as potential weight gain and how exercise may help in reducing the burden of self-care.
• ACT & Exercise in the World of Modulator Therapy: Can We Lighten the Load?
• Nutritional & Gastrointestinal Impact of Highly Effective Modulators
• Promoting Healthy Living in the Era of CFTR Modulators: Where Do We Begin
Tackling CF Infections in the Modern Era contained practical information that may help promote dialogue and coordination between patients and their care teams. This session was highly technical, but it provided insight into the continuous battle against infection and the Foundation’s Infection Research Initiative.
Plenary 1: Meeting the Moment: Lessons for a Changing World provides a useful look at how lessons learned while responding to the challenges of COVID-19 are being analyzed to apply to future patient-care team interactions.
Kayleena Ronksley, mother of a child with CF
I am a nurse, and a mother of three boys. My youngest, Jude, is 17 months old and has cystic fibrosis. So, we are still fairly new to CF. One way I cope with Jude’s diagnosis is to learn all I can about CF. We are very thankful for our wonderful CF care team and all of the guidance and education they give us. I am also very thankful for the CF Foundation and NACFC and its awesome array of programs for the entire CF community. Below are some of my favorites from this year’s NACFC.
Plenary 2: Working Together to Pave the Path to a Cure helped me learn more about the different therapies for CF including mRNA therapy, gene therapy, and gene editing.
Plenary 3: Expanding the Horizon of Therapies for the Underlying Causes of CF made me excited for the future of CF research and drug development. Dr. Manu Jain talked about the people with different mutations that are now approved for CFTR modulators, the development of different genetic therapies to help properly restore or replace CFTR, as well as other strategies to help correct the sodium and chloride ion movement defects that cause issues for people with CF.
Emerging Topics in Endocrinology helped give clarity on the differences and similarities of CF-related diabetes and type 2 diabetes, as well as the difference in diagnosis and treatment. I know diabetes affects many with cystic fibrosis, so I have been wanting to learn more. It was also interesting to learn more about the emerging data on how highly effective modulators affect blood sugar control, insulin sensitivity, and bone health.
Domonique Gamory, quality improvement analyst at the CF Foundation
As a new CF Foundation employee, I was extremely excited to listen and learn during my first NACFC. I started with the Foundation in August as a quality improvement analyst and I was really looking forward to the sessions discussing the improvement of care and decreasing health disparities, as well as hearing from people with CF.
Health Equity in CF Care brought awareness to the bias in medicine and how it can be a struggle for people of color to be diagnosed with CF because of the misconceptions some medical staff may have.
Food Insecurity Innovations provided insight into how food insecurity affects other aspects of an individual’s health and can change the course of care.
I also chose sessions to give me a glimpse into the lives of people with CF, their families, and the changes in care. Quality Improvement Framework for Change: Networks, Education, and Engagement helped me focus on my role at the Foundation and how I can make more of an impact. Personal Relationships Across the Lifespan in CF increased my awareness into what people with CF need and their concerns, which have become my concerns.
The Future Is Now: Innovations in Outpatient Care showed me the strides we have made — especially continuing care in a pandemic — without putting people with CF at risk and how changes in care affects what we should be asking people with CF in the Experience of Care survey.
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