Let’s Raise Awareness by Sharing Our Stories This September
As we head into the last week of August, summer has been flying by, kids are heading back to school, and fall will soon be upon us.
I love the cooler weather that fall brings, as I’ve found it’s been harder to breathe in the heat and humidity of summer since I was diagnosed with idiopathic pulmonary fibrosis (IPF) five years ago. I also enjoy the beauty of the changing leaves, along with the fall scents and colors.
In the Northern Hemisphere, fall begins in September, which also holds significance as PF Awareness Month.
During September, PF patients, caregivers, advocates, and medical professionals step up efforts to raise awareness of this life-threatening lung disease that has no cure. The IPF Foundation notes that an estimated 50,000 people die in the U.S. from this disease each year, which is more than most cancers. Despite this, I regularly hear that most people have never heard of IPF.
While fall is one of my favorite seasons, September requires a lot of work. It’s a time to talk about IPF and share our stories to raise awareness.
This year, BioNews, the parent company of Pulmonary Fibrosis News, is taking on a new initiative that I am coordinating alongside fellow columnist Kevin Olson. It’s called “30 Days of PF,” and the goal is to highlight the voices of patients and caregivers who are affected by this progressive lung disease.
I recently published a forum post about this initiative with an official invite to our community to participate by submitting a brief story about how this disease has affected you. If you’re a patient or caregiver, we would love to hear from you and include your contribution in this initiative, which will launch across PF News’ social media sites next month. We hope these stories will help debunk myths about IPF, educate others about this disease, and raise awareness.
Why is raising awareness important?
In 2017, I wrote a column about how PF Awareness Month feels less important than others. I would guess that if you stopped someone on the street and asked them what the color of the breast cancer awareness ribbon is, they would know it’s pink. But if you asked them what color the PF ribbon is, they likely wouldn’t know, and possibly would have never even heard of our disease.
Unfortunately, PF is always fatal without a lung transplant, since there is no cure. However, if a patient is diagnosed early, the disease can be managed, improving a patient’s quality of life.
Herein lies the problem: Early diagnosis rarely occurs because so few people, including physicians, know about IPF and what to look for. Early diagnosis is only one goal of some amazing organizations that are working hard to eradicate this disease.
This September, use your voice to help their efforts. Take advantage of the PF News social media platforms, which have an extensive reach, and share your story to raise awareness.
To participate in “30 Days of PF,” please submit a short essay of 300-400 words, along with a photo, to [email protected]. Several topic ideas include: what IPF has taught you; what your diagnostic experience was like; what you want others to know about IPF; and how you live with IPF each day.
Regardless of the topic, we want to hear from you. If you have any questions about this initiative or how you can help raise PF awareness this September, please don’t hesitate to get in touch. You can comment below or email me at [email protected].
We look forward to working alongside you to illuminate patient and caregiver voices during our strongest PF Awareness Month ever!
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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.
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Comments
Maus
Hi Iam a 58 year old female and live in Port Macquarie NSW Australia. I was diagnosed with IPF 5 years ago the Drs found it accidentally when I had a xray the report came back I had an intestinal lung disease. My first appointment with the specialist is a visit I will never forget he talked about a double lung transplant and how I will possibly need to go to St Vincent's Hospital in Sydney. Not only was my husband and I floored we had never heard about IPF. The journey began a VATS operation in Newcastle to determine if it was definitely IPF as this was needed at that time to be eligible for a lung transplant a new medication was just about to be approved called Esbriet there was only one other medication proved to stable the advancement of this terminal illness. The 3 monthly specialist visits and breathing tests the 2 to 5 year time limit your given to live were nothing compared to how people would react to my illness. People were dismissive one person even said your illness embarrasses us , I looked fine but wasn't at all. It was very hard to educate people about a terminal illness that no one had ever heard about. Many people under the breath made the comment I look sicker than her or how could she walk if she is so sick. I became angry at first as every 3 month visit to the specialist was a living nightmare not knowing if I was declining, no emotional support from my friends only from my husband and my children. One member of the family said that I was doing it all for attention, imagine having to live with a terminal illness and so much negativity from friends and others. It has taken me a long time I would say 5 years to understand people don't believe what they can't see like a person with a mental illness on the outside they may appear quite normal. So I have now decided with a group of wonderful Golfing friends to educate people on IPF and help them to be aware of this disease on September the 17th if covid restrictions allow us. We have organised a fun Golfing day with lots of prizes and special gifts while talking about my own experience and letting people know exactly what IPF is. A small way to increase the awareness of IPF and hopefully other golf clubs may take up the challenge and join us in Australia ??.
Steve Dragoo
I'm in...
Charlene Marshall
Hi Maus,
Thank you so much for reading my column and reaching out via the comments. I really appreciate hearing about your experience with IPF but so sorry you endured so much negativity... as if dealing with this disease isn't difficult enough! You sound very brave, and way to be proactive in making the efforts to educate others through your September 17th event. Kudos to you!
Would you want to share this story for part of our 30 days of PF initiative? I'm sure others could benefit from it! If so, I'm happy to email you more details? Just let me know when you can :)
Many thanks,
Charlene.
Randall Thornton
Hello Charlene. I was going to write a story to the headquarters for the 30 days in Sept, but I don't have a microsoft account, so cannot. In 2017 I was having trouble breathing, so went to a lung doctor. Since I had been a heavy smoker for 50 years, he said I had emphysema. Then in 2020, the breathing got bad with sweats, headache. Went to the hospital and they stuck the swab up my nose and said I have covid. They threw me a bed, put me into a coma and that is how I was for 3 weeks. When they got the test results back, found out I didn't. So they sent me another hospital. That place didn't know why I was there and just laid in bed. There I started what I found out later is A-Fib. So, they sent me another hospital. I was put into a special area for observation. There I was examinted by a lung surgeon who said I knew what's wrong with you and scheduled me for exploritory surgery. There she found that my right lung was gone and the diaphram was up in my chest. She took samples from what was left of that lung and sent it to the hospital in Rochester, Mn. It took awhile to get the results back but when they did, it was shocking. I had 3 different doctores at the hospital and one came in and told me I have IPF. I had no idea what that was. He then explained it to me and his thoughts was I had gotten it thru chemicals. I hadn't worked around chemicals. After wards I took a long thought backwards and remembered I had worked at Owens-Corning back in the last 70's. They then explained to me about it being a disease with no cure. I just laid there in a trance. When I got my thoughts back together, I asked him how long do I have and when he told me, all I could do was cry. All the things I had hoped to do when retired, just went up in smoke. It took awhile for me to get this straight in my mind, but I now have. I just wish I could travel. I am 24/7 oxygen and cannot go up in altitude. I live on the west side of the Rocky Mountains, so no going to Denver. My wife and I usually always traveled after Labor Day, but haven't been anywhere now for over 2 years. The 2 of the kids are in Denver with the grandkids and as you can guess, the highway doesn't come this way.
What to do with the rest of my life, I am taking it one day at a time. I keep pushing myself to do things. It is hard for me to just set. I have always been a doer and love to travel. I had a wood shop and had to give that up. I should just be thankful I'm still alive. My wife said I died twice in the hospital, but made it thru. During the covid thing, we didn't see each other for 4 months. When I came home in a wheelchair, I had lost almost a 100 #. Since then I have gained that back, been able to drive again and keep making plans for things to do in the future. I figure if I keep looking ahead and making plans, I'll get there. We were hoping to go to the west coast this fall to visit our youngest son and family, but would need to rent a motorhome with generator the run the oxygen. To many expenses and cannot afford it now. Maybe next year. I'm planning on it.
Charelen, hope this find you doing well and have great weekend.