On March 8th, our advocacy month continues by celebrating International Women’s Day. Though both men and women can be afflicted by PF, this is an important time for exploring the unique challenges faced by women – and for recognizing the numerous women who have made significant strides in PF-related research.
How Pulmonary Fibrosis Affects Women:
1. Symptoms and Quality of Life:
Again, pulmonary fibrosis can affect individuals of any gender, but studies suggest that the disease may manifest differently in women. For instance, women often report more severe symptoms and/or worse quality of life than men do. Understanding these gender-specific variations is crucial for tailoring effective treatment plans.
2. Diagnosis Challenges:
Women may face unique challenges in the diagnosis of PF. PF is more common for men, and therefore may be overlooked by doctors of female patients. Symptoms can be subtle and sometimes attributed to other conditions, so increased awareness is essential to ensure timely and accurate diagnoses.
3. Roles and Responsibilities:
While every family is different… many women in our community have shared that fighting PF has significantly changed how they engage with their loved ones. Having symptoms of PF can dramatically change your former capacity and patterns for giving or receiving support. For those who typically took on the caregiver role (taking care of their loved ones, even informally), for instance, fighting PF can prevent them from sustaining those selfless patterns.
Needing support with day-to-day life can also reveal cracks in a support system. It can be very difficult to accept help in your home or life when you’re used to being the one functioning as homemaker, emotional provider, time manager, etc. For some, it’s even more difficult because the formal help is not available to them, even if it feels like they would’ve offered it to someone in a similar situation. Common scenarios we’ve heard include: children have grown up but are busy or live elsewhere, patients have no spouse or their spouse must work instead of helping with health-related quality of life needs, or they technically have support at home but live in rural areas far from medical care.
No matter your unique circumstances, aspects of your identity such as gender can play a role in how you relate with yourself and the PF diagnosis.
How Women Are Changing the Course of PF:
Through all the adversity, many inspiring women have taken on the battle fiercely. Below are just a few instances of women changing the course of PF research, education, advocacy, and activism…
Female Researchers Making Strides in PF Research:
- Dr. Stephanie Levine, former President of the American College of Chest Physicians, has profoundly described the barriers women in pulmonary medicine face, and paved the way for opportunities to “break the glass ceiling.”
- Nunzia Caporarello, PhD, louds numerous publications that have driven PF research forward. She’s been investigating blood vessels of the lung and the role they play in the pathology and progression of PF – something that might not have received the much-needed attention without her diligent efforts.
Neha Shah, PhD is our Director at PF NOW! She has been working behind the scenes to prepare her latest manuscript about natural therapies that may help people with PF. Stay tuned for updates this spring!
Women Advocating for PF Awareness:
- Laura Dern: Academy Award-winning actress Laura Dern has been an advocate for pulmonary fibrosis awareness since her mother’s battle with the disease. She has spoken outwardly about the impact of PF on families and the importance of research funding.
- PFF Advocates: Earlier this month was “PFF Hill Day” – a time for people to advocate about PF and meet on Zoom with their legislators and congressional staff. There were many women who volunteered and took action to improve patients’ access to supplemental oxygen, increase funding for PF research, and more.
International Women’s Day serves as a powerful platform to amplify the voices of women affected by pulmonary fibrosis and those working tirelessly to advance research and awareness. It’s an opportunity to acknowledge the challenges faced by women with PF, appreciate the contributions of female researchers, and celebrate the advocacy efforts of well-known women who have spoken out about the disease. But you don’t have to be famous or affluent to make a difference! Help us celebrate the women in your life who battle PF – either as a patient or as a relative, caregiver, friend, etc. This month, give them a special shoutout on social media, in the community forum, or at support group.
Stay In Touch
PF NOW! hosts virtual support groups on Teams multiple times each month. Not only will you strengthen your network of connections but you’ll learn firsthand how those with PF best look after themselves. PF NOW! also has a Facebook group whose active community shares their PF journey and their tips with others. New to online support groups? Download our free step-by-step guide for online advocacy here.
Never disregard professional medical advice or delay in seeking it because of any information received from us.
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