Rare Disease Day Brings Me Hope as a PF Patient

Rare Disease Day Brings Me Hope as a PF Patient
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We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability to breathe.

Throughout my nearly five years of living with IPF, dealing with supplemental oxygen, shortness of breath, and intense fatigue and managing medications to try and outlive this cruel lung disease, there have been many hard moments. Many times when I’ve lost hope and wasn’t sure I’d be able to find it again.

That said, I believe that the universe works in mysterious ways. There have been too many incidents in my life where I learned why something happened in hindsight, and I believe it’s because the universe was looking out for me. This also tends to happen when I’ve lost hope; some event, gesture, or support from others always seems to restore my hope when I’ve lost it.

As a patient living with IPF, what brings you hope?

I know the prospect of research or clinical trials bringing an improved quality of life, or ultimately a cure, is what makes some feel hopeful. For others, hope comes from sharing their lived experience with those who are newly diagnosed, making the process of navigating the disease a little easier.

Regardless of how you find hope as a patient living with IPF, or any rare disease for that matter, hanging on to it and being hopeful contributes positively to our mental and physical health. This is why, amid many dark moments with this disease, I like to spend time thinking about what brings me hope. I also like to think about past experiences and how they left me feeling hopeful.

Oddly enough, the two most hope-inspiring events I’ve attended throughout my IPF journey happened within a year of each other. Each brought me hope for a different reason.

Hope for a cure

In the fall of 2019, I attended the Pulmonary Fibrosis Foundation (PFF) Summit in San Antonio. I had just returned from international travels, so I was exhausted, but I knew I wanted to attend. I’d never been to a PFF event before, and I knew the opportunities to network and learn about IPF would be endless.

In addition to learning a lot about IPF, on both a physiological level and from a clinical perspective, I also had the opportunity to see just how many people were invested in eradicating this terrible disease. When I flew home from the summit, I realized how big the network of researchers, medical professionals, advocates, and patients was, and that they were all working toward the same goal. I left feeling hopeful that someday a cure would be found for my disease.

Hope for awareness

Rare Disease Day (RDD) occurs annually on the last day of February. This is one of the biggest events that brings awareness to the one in 20 people worldwide who live with one or more of over 6,000 identified rare diseases. One of those diseases is IPF, so as patients, we’re invited to help raise awareness about our illness on RDD, which falls on Feb. 28 this year.

Ultimately, awareness leads to more research and subsequently better treatment options and cures. Having a day dedicated to raising awareness brings me hope that even more people will become aware of IPF. From there, maybe they will commit to helping patients by funding research or a clinical trial, which could then make progress toward improving quality of life or finding a cure for this cruel lung disease.

Last year, I had the opportunity to spend RDD in California with a biotech company working on an inhaled therapy to reduce the IPF cough. I was able to share my story about living with IPF, as many of the employees hadn’t met a patient with the disease.

I also organized an activity that simulated what it was like to breathe with a fibrotic lung, helping many employees understand the struggles of IPF. I was told multiple times that better understanding how IPF felt further inspired them to continue their efforts.

While there are many other things that bring me hope as an IPF patient, I think RDD trumps all of them. Action starts with awareness, and RDD is an entire day dedicated to raising awareness and speaking up about how difficult IPF is for patients and their caregivers.

How are you going to help raise IPF awareness this Rare Disease Day? Check out past events here.

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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.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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5 comments

  1. Helen Donaghy says:

    I have IPF I AM 75 YEARS BUT have just been diagnosed, on medication, a bit frightning to find this out as I have always had shadows on my lungs from TB in my years.

    • Charlene Marshall says:

      Hi Helen,

      Thanks so much for reading my columns and reaching out via the comments. I’m sorry to hear of your new IPF diagnosis; those days are always tough so I hope you’re being gentle with yourself…. it can be overwhelming. I hope the medication side effects are tolerable for you too, Helen. If you ever want a community to connect with, who truly understands what it is like to live with IPF, you’re welcome to join our forums: https://pulmonaryfibrosisnews.com/forums/ lots of really great people, information and support can be found on there.
      Take care,
      Charlene.

  2. Christopher says:

    Hi Charlene! Just came across this website and so glad I did. I was just diagnosed with PF. I’m a 51 year old male and I can’t help but think 30+ years in construction may have contributed. I go for a biopsy in 3 weeks to help decide treatment. Right now I suffer from chest pain, dry cough, and extreme fatigue at times. Also feels like my lungs are very warm sometimes. I live nature and love to hike. I’m worried about PF affecting my ability to get back to the mountains and enjoy hiking in nature. I loved your article and will be following you. Thank !

    • Charlene Marshall says:

      Hi Christopher,

      Thanks so much for reading my columns and reaching out via the comments. Sorry to hear of your new IPF diagnosis, but I’m glad you’re seeking out support and information from credible sources. Another great resources I’d recommend is our PF forums, which can be found here: https://pulmonaryfibrosisnews.com/forums/ … this platform is filled with amazing fellow patients, caregivers, researchers etc. who share their brave stories and contribute so much hope and support. They also talk a lot about the lung biopsy on there if you have any questions about yours that is coming up.

      While everyone is different, I am very much like you Christopher, and enjoy nature, outdoors and traveling. 3 years after my diagnosis in 2019, I snorkled in Hawaii and hiked along the Na Pali coast in Kauai. You can still enjoy life with this disease, it’s just a matter of learning to live “with it”. Take good care and keep in touch!
      Charlene.

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