Could Genetic Studies Promote a Better Understanding of IPF?
In times of hardship, I’ve found nothing to be more valuable than human connection. After I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a life-threatening and debilitating lung disease, it felt as though no one could relate. That changed when I started talking with other IPF patients.
Sharing our lived experiences provides both connection and insight. At the Pulmonary Fibrosis News Forums, the PF community can openly discuss the physical, emotional, and medical aspects of living with the disease.
One topic that greatly interests me is genetics, and it comes up frequently in the forums. For example, many IPF patients have shared that doctors didn’t bring up a possible genetic link when they were diagnosed. However, I was asked about any familial history of fibrotic lung disease, and my siblings were given the opportunity to see the specialist who diagnosed me.
Researchers are still learning about genetics and IPF, and I wonder what a better understanding of this relationship would tell us. Genetic studies have been used to predict the likelihood of someone developing certain conditions, and they also can help scientists develop targeted therapies more quickly and effectively.
Perhaps there is an opportunity for patients to help one another by contributing to this research.
Research is underway
Several studies have already begun investigating the relationship between IPF and genetics. I can’t endorse any of them, but the research seems promising.
In 2019, the Global Biobank Meta-analysis Initiative united 19 biobanks across the world in seeking to gain a broader understanding of human health and genetics. Of the 2.1 million total research participants, more than 8,000 had IPF. I am curious and excited to see how the meta-analysis of their genetic information may improve disease understanding.
My interest has also been piqued by a research study sponsored by the genetic testing company 23andMe. 23andMe is doing a study to learn the underlying genetics behind idiopathic pulmonary fibrosis. Their goal is to contribute to the development of a more effective drug for those living with IPF. Your participation could be vital in reaching that goal.
Information collected in this study could shed light on factors that predispose people to IPF, potentially allowing doctors to conduct earlier screening for the disease. This would be beneficial, as we know that earlier diagnosis and treatment results in better outcomes for IPF patients.
A way to support the IPF community
Since I was unwillingly thrust into the world of IPF, I have pondered how to use my situation to help other patients. I am privileged to write this column, co-moderate the PF News Forums, and interact with many patients via email, but I have a burning desire to do more.
I ask myself questions such as, how can I make this disease easier on others? How can I share the knowledge I’ve gained? How can I contribute to eradicating IPF? After all, no one deserves to struggle with simply trying to breathe.
While it may not feel as direct, sharing my genetic information with researchers can indeed help other patients.
Many IPF patients have expressed concerns about their children or grandchildren also developing this cruel disease. While there are differing opinions about genetic factors, one way to address this fear and further scientific understanding is to contribute to genetics research.
Who knows? Perhaps our participation could help save future lives.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.