Ways to celebrate — yes! — life with a rare disease

This Rare Disease Day, honor the journey with fundraising, ceremony, and more

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by Christie Patient |

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My mom, Holly, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018. An acute exacerbation booked her a one-way ticket to the intensive care unit for a four-month wait for new lungs. Less than one year after her diagnosis, she emerged from an operating room at the University of California, San Francisco without the disease, thanks to a bilateral lung transplant.

If you had told me on one of those ceaseless days of worry while my mom was in intensive care that one day I’d celebrate Rare Disease Day, I might’ve laughed in your face. I couldn’t imagine ever feeling anything but hatred for the rare disease that was stealing my mom’s life right before my eyes.

When I say we “celebrate” Rare Disease Day, what I mean is that we celebrate my mom’s donor and the donor’s family. We celebrate the brilliant healthcare workers who kept my mom alive in the intensive care unit long enough to receive her new lungs. We celebrate the clarity and connection that comes when you face a trial with loved ones. We celebrate our luck to be able to experience joy on this day.

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But we also take this time to remember and reflect on the parts of my mom’s life with IPF that weren’t worthy of celebration. I recall countless moments of terror, loneliness, and pain. Life with this particular rare disease was not fun or easy for anyone in our family.

I encourage you all to take a moment to reflect on your rare disease journey this Feb. 29. What have been some of the challenges, and where have you found moments of joy because of your rare disease? Is there something you can do to help you process your experience or give back to the community?

On the first Rare Disease Day after my mom’s transplant, I decided to do SeeRareRun, a 5K race. I made a team and invited people to donate and run or walk the 5K on Feb. 29. Five of my family members and friends joined me from around the world to move our bodies that Rare Disease Day. Reaching out helped me spread IPF awareness, and the race entry proceeds were donated to the National Organization for Rare Disorders (NORD).

It felt good to participate in some low-key activism and support the rare disease community. The Rare Disease Day website has a list of such events worldwide, both in-person and online, including symposiums, support circles, science briefs, kids events, and runs. Some events focus on just one disease, and others cover rare disease more broadly.

In the meantime, here are some other ideas that you might add to your calendar to celebrate Rare Disease Day.

Raise funds and awareness

Raising funds and awareness is a great thing to do year-round, but it’s especially fruitful if you can build your campaign on the foundation of Rare Disease Day. If you’ve ever been unsure how to reply to loved ones who want to help with your rare disease, these tasks will do.

Fundraising for organizations like NORD helps move research and clinical trials forward. It also can help provide care or supplies for people in need. Think about what you want to improve in the rare disease world and pick an organization that would help achieve your goal.

For example, the year my mom was in the hospital waiting for her transplant on my birthday, I set up a fundraiser for Donate Life California, part of the Donate Life America organization. I shared my campaign on social media and, with minimal effort on my part, raised over $500 to donate to the organization that ultimately helped save my mom’s life.

This fundraiser’s success was part of what inspired me to be a team captain for a Rare Disease Day run the following year.

Read, write, and share rare disease stories

Reading columns, blogs, and books by other people in the rare disease community is a great way to connect and learn. A columnist for Sarcoidosis News, Kerry Wong, recently self-published a rare disease anthology, “Kaleidoscope: Rare Disease Stories,” that’s full of essays from a diverse selection of rare disease patients.

If you have a story to tell — spoiler, you do — start writing it down! If it’s scary to share, start in a private journal and see what happens. If you’re a little more comfortable, try writing a blog or newsletter to family and friends or jump into a conversation in our forums.

Create ceremony around your disease journey

This one is personal. Whatever you do to honor your story should come from your own heart, of course, but here are some ideas.

Write a letter to your older or younger self. Have a conversation with a version of you that isn’t here today. Write a letter to a caregiver, doctor, or donor. Or visit an important place that’s significant to your life with rare disease. For example, PF News columnist Sam Kirton visits the National Donor Memorial on his transplant anniversary.

Whatever you do to acknowledge Rare Disease Day this year, I’m happy to be celebrating with you from afar.

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.


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