IPF Has Changed My Life: Celebrating Rare Disease Day

IPF Has Changed My Life: Celebrating Rare Disease Day
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As I write this, I have been living with a rare disease for 1,413 days. On April 7, 2016, my life was transformed from an active young adult to a chronically ill patient when I was diagnosed with idiopathic pulmonary fibrosis (IPF). I remember how naive I was about how it would affect me. I thought, “I am a happy-go-lucky young adult. I’ll get lungs and move on from this. Others may have a three-to-five-year prognosis, but I’ll outlive this disease.”

I am doing well nearly four years after being diagnosed, but it has not been easy. There is no cure and no matter what I tried — exercise, diet, vitamins, prayers, or wishful thinking — nothing would rid my lungs of IPF. I had to make a choice: I could be upset and angry that I was diagnosed with a chronic lung disease, or I could accept it and try to make the best out of the situation. I chose the latter, though I still have plenty of negative moments.

I decided to share my story partly because writing is therapeutic, but also because I was comforted by the stories of others when I was newly diagnosed. I never imagined myself as a writer, especially not one who focused on living with a terminal lung disease. But this is my path and I need to do what I can with it.

Another decision I made was to raise awareness of IPF. I’ve heard many times that IPF is a rare disease and that it is even more rare to be diagnosed at 28. Some physicians think my disease is the result of an underlying condition rather than idiopathic, but tests have not revealed another cause. I’m committed to helping others understand IPF and how it affects a patient’s life.

This Feb. 29 is Rare Disease Day. The campaign was founded in 2008 by EURORDIS, a nonprofit alliance that is the voice for people living with rare diseases in Europe, to raise awareness among the general public and decision-makers. I am passionate about Rare Disease Day because its objectives align so closely with mine.

Three years ago I wrote a column about how raising awareness felt like a patient’s responsibility, and in 2018, I explained why Rare Disease Day is important to me. I am in a race against time. We need more people to understand IPF, and more research to give patients like me hope.

Visit the Pulmonary Fibrosis News Forums to read more about ways to raise awareness for IPF on Rare Disease Day 2020. Please help us by finding a way to showcase Rare Disease Day and share it with us on the forums or by using the hashtag #WHATMAKESMERAREPF on social media. Let’s be proud of who we are as rare disease patients, and let’s break the internet on Feb. 29!

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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6 comments

  1. Salvador Malto says:

    I am already 75 years old and I was diagnosed with PF when I was 19 years old I undergo CT scan recently and the results are no signs of aneurism, no signs of enlargement of the heart but only I was about to experience tuberculosis. As of now, my feeling is slowly I can not breathe the normal way.

    • Charlene Marshall says:

      Hi Salvador,

      Thanks so much for reading my columns and reaching out via the comments. Learning how long you’ve been living with PF – though I know it likely hasn’t been easy – is really reassuring. Glad no other co-morbidities are showing as a result of this cruel disease. Are you using supplemental oxygen yet? This might help normalize your breathing a bit better. Thanks for writing to us!
      Charlene.

    • Charlene Marshall says:

      Hi Heather,

      Thanks so much for reading my column and reaching out. I love hearing from others, although I wish none of us were plagued by this cruel disease. I’m sorry to har of your husband’s diagnosis – how are you both doing? Please don’t hesitate to connect if you need support, that has been my greatest blessing while dealing with this, having others to understand. Thinking of you and your husband.
      Charlene.

  2. Lisa says:

    My niece is 27 and was recently diagnosed. She has 3 little girls under the age of 5. What do we do, where do we go from here? It’s so overwhelming. I’m trying to get her in to a specialist for a 2nd opinion. She has 25% lung capacity. what does that mean? I need to know so much. Read your message and will continue to follow your story. Thanks and Best of Luck to you. Prayers

    • Charlene Marshall says:

      Hi Lisa,

      Thank you so much for reading my columns and getting in touch, though I am so very sorry to hear of your niece. Please let her know my heart and thoughts are with her, as I was diagnosed at 28 and you’re right: it is overwhelming. If she needs someone to talk to, she is welcome to email me anytime: [email protected], as are you. I’m glad you’re seeking out a second opinion, I personally believe this is always important. I was misdiagnosed for 13 months because “I was too young” or “it can’t be IPF”, and yet, it was. Can you ensure your second opinion is a specialist from one of the PF speciality centres? I’m not sure if this is up to date information, but contacting the Pulmonary Fibrosis Foundation is a good place to start too, but check out this link: https://pulmonaryfibrosisnow.org/2018/09/05/10-top-clinics-hospitals-pulmonary-fibrosis/ Getting your niece proper care is really important. The 25% lung capacity is a measurement of several lung function values of hers, based on pulmonary function testing. I’m not qualified to explain it all, but the specialist should be able to do this with you. Please feel free to write any time and if I can help at all my sharing my experience, or how I navigate the emotional and mental aspects of this disease, I’d be happy to. It can be so tough! Sending prayers to you both. Charlene.

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