3 ways I plan to raise awareness on Rare Disease Day

As Rare Disease Day approaches on Feb. 28, I’m trying to narrow the focus of my advocacy efforts.

I never imagined I’d become an advocate and grow to love so many people living with rare diseases. But that all changed in April 2016, when I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease that steals your ability to breathe.

The rare disease world can be a lonely place, especially as a young adult. I’ve found it difficult to relate to many others living with IPF, as patients are typically a lot older. That’s why connecting with other columnists at BioNews, the parent company of this website, has been so comforting. It’s an inclusive community of people who truly understand what it’s like living with a rare disease.

While it’s important to give a voice to this community, I’ve struggled to formulate my goals for Rare Disease Day because there’s so much to accomplish. Three years into the pandemic, priorities in research and drug development have shifted, and not all rare disease patients are benefiting from that change.

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COVID-19 is known to cause respiratory issues, and a significant number of people who contracted the virus have developed pulmonary fibrosis, or scarring of the lungs. This has fueled research into fibrotic lung diseases, including IPF. However, progress has slowed for many other nonpulmonary conditions.

As COVID-19 continues to change the research landscape, many of my friends and loved ones living with rare diseases must double down on their advocacy efforts. After talking with fellow patients about how they plan to leverage their voices for Rare Disease Day, I settled on three main goals of my own.

Following is how I plan to raise awareness of rare diseases this year.

Make the invisible, visible

Aside from the use of supplemental oxygen, IPF tends to be an invisible illness. Even when it’s not apparent, the difficulties of living with a lung disease penetrate every aspect of my life.

I often shy away from using oxygen, especially in new situations, so that I don’t have to talk about these challenges. For Rare Disease Day, however, I will wear my oxygen and explain why I need it as a young adult. I will have these conversations in person and across various online platforms.

Educate others on the importance of caring for their lungs

Pulmonary fibrosis can be idiopathic, meaning there’s no known cause. But some fibrotic lung diseases have been linked to environmental or occupational hazards, and I’ve found that these risk factors aren’t widely known. Unfortunately, people can develop this debilitating lung disease after unknowingly exposing themselves to a hazard or even taking certain medications.

One of my goals this Rare Disease Day is to educate others on how to proactively care for their lungs. This goes beyond encouraging people to stop smoking, as the health risks linked to that habit are now well documented. Instead, I’d like to focus my efforts on highlighting lesser-known toxins that can damage the lungs and respiratory tract. In 2017, I wrote a column describing what I wish people with healthy lungs knew. Sharing this information continues to be my goal.

Advocate for the importance of organ donation

Unfortunately, there is no cure for IPF. A lung transplant can extend a patient’s life, though it involves many considerations, risks, and implications for the future. That said, it wouldn’t be an option without organ donors, so my final goal is to raise awareness of organ donation and how it can transform lives.

I know other patients will be spending Rare Disease Day on Capitol Hill lobbying for more research and drug development, which is extremely important. But as someone who is deeply impacted by organ donation, I want to focus on this cause, as the number of organ donors must increase dramatically in order to meet the current demand.

How will you raise awareness of rare diseases on Feb. 28? Please share in the comments below.

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.