Highlighting the Unique Support Needs of Young Adults with PF

Highlighting the Unique Support Needs of Young Adults with PF

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I had never heard of the disease. I was told that it was rare. Even rarer, my doctors said, was my diagnosis at 28. They had considered IPF when first looking for answers for my breathlessness, fatigue, and dry cough, but thought I was too young.

I am a passionate advocate for the unique struggles of young adults learning to live with a fatal lung disease. I know dozens of young adults living with IPF, or pulmonary fibrosis (PF) secondary to another disease. It can be irritating to hear how rare it is when looking at the activity on social media.

I recently pulled analytics from two Facebook platforms supporting those living with PF and the numbers surprised me. Out of approximately 19,000 followers across these platforms, 3,300 are ages 18 to 44. Although there is overlap between the platforms — and some of those followers are caregivers — there are clearly young adults in need of support.

How can we, as a community, support this demographic?

Support groups are important for anyone living with a chronic illness. Connecting with others going through similar experiences is validating, comforting, and reduces feelings of isolation. But the groups are not as effective when your age prevents you from relating to group discussions. The needs of young adults are often overlooked.

Where can young adults receive the support they need, and what are the issues they face while living with IPF?

I’ve been privileged to work with several advocates in our community to help highlight the needs of this demographic. Breathe Support Network launched a Facebook group for people under 40 living with PF. I am thrilled to use this platform to share my experiences and to discuss topics relevant to me and others my age. Respivant Sciences has also been open to discussions about supporting this demographic. I have found them to be kind and compassionate in their conversations with me. And the IPF Foundation is committed to helping others understand that older adults are not the only ones affected. I am grateful for the efforts of of these companies.

As for the issues facing young adults with IPF, here are a few:

  • Infertility: Some medications used to manage IPF can cause reproductive issues. It is strongly advised not to start a family while on either of the two anti-fibrotic therapies for IPF. The grief associated with infertility can be overwhelming.
  • Secondary diseases: Even for those who receive a lung transplant, secondary diseases such as diabetes are common.
  • Financial implications: Medication, travel for medical appointments, hospital parking, and time missed from work are costly. These expenses can be prohibitive for young adults just starting out and making big purchases, such as a first home.
  • Predeceasing your parents: It is not natural for children to die before their parents. I often think about how my parents will cope with the likelihood that I will die before them.

Please join me in talking about the fact that IPF is not as rare in young adults as some might think!

***

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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