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Why It’s Important to Advocate for our Disease
Like many of our readers at Pulmonary Fibrosis News, I hadn’t heard of this disease throughout the treatment of my symptoms and subsequent diagnosis. I did the “Google doctor search” and read many other reputable sites; such as research hospitals, The Pulmonary Fibrosis Foundation, and professional journals. What I found was not many people outside of the pulmonary fibrosis community were aware of the devastation this disease causes. When I mentioned this to my doctor he stated, “Pulmonary fibrosis is not a CHIC disease”. There is not a major backing to raise funds for those living with this disease.
It seems raising funds is left up to several pharmaceutical companies, The Pulmonary Fibrosis Foundation, National Institute of Health, and grass roots organizations to raise money at a local level. In recent news, The American Lung Association identifies pulmonary fibrosis as a condition they will provide monies for research. I find it amazing only within the past year this disease is being recognized by a national philanthropic organization whose main benefactors are lung patients. At least we are now recognized and somewhat supported in research by The American Lung Association.
After my diagnosis, I ordered the bracelets provided by the Pulmonary Fibrosis Foundation to pass out to my family and friends. Unbeknownst to me, a friend and co-worker ordered a bracelet for every staff member at my school to show a support of unity for me and my disease. It was surprising to say the least to see every member wearing the bracelets. I look at wearing the bracelet as a talking point for inquisitive people. If someone asks me what the bracelet signifies, they are going to hear a story. I have always felt this was my obligation to spread the word about pulmonary fibrosis and advocate for those who are unable to advocate for themselves.
After my transplant, I participated in several conferences with Genentech and Boehringer Ingelheim held at the Cleveland Clinic main campus. These companies have developed the only medicines (Esbriet and OFEV) on the market that may slow the progression of the disease. In addition, CHEST and The American Thoracic Society were partners in this conference. Myself and other patients shared our stories with the employees of the two pharmaceutical companies. By listening to our stories, the participants gained a significant grasp on what this disease is capable of doing.
I encourage everyone touched by this disease to advocate for more funds for research and care. Tell anyone who will listen your story. The disease is still an unknown to a majority of the population.
What can you or we do to advocate for pulmonary fibrosis?
Have you participated in any fundraising activities?
How can we get the word out about pulmonary fibrosis?
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4 Replies
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Hello Mark, thanks for sharing your story and also the important awareness you’re doing and that those around you are also going above and beyond to share your story in the hope of making the disease more known within the community.
At present the status of Pulmonary Fibrosis is of similar status in the UK. The current statistics we have for those diagnosed or living with PF is known to be vastly under representative and general awareness at a medical level, let alone in the general public is also much lower than many other types of illnesses. Before Dad was diagnosed we too had never heard of the disease, and our Consultant had only treated few patients with this illness so was actively learning himself through our journey. Anyone from Palliative Care or if Dad was admitted to the hospital would ignore the PF diagnosis and automatically treat him for COPD, which as you can understand isn’t always the correct response regarding symptom management.
Thankfully the British Lung Foundation have fought quite hard with the government to increase the amount of funding they receive to sponsor more research and a relatively new charity called Action for Pulmonary Fibrosis has come on leaps and bounds since it was founded about six years ago. They already have support groups all over the UK, a telephone support service and have funded a couple of research projects for genetic innovation as well as raising awareness within the respiratory nursing community.
I personally have only participated in few fundraising activities, nothing whilst my Dad was alive. We raised money at his funeral and did a cake sale where my Mum used to work, but personally I find the financial fundraising quite stressful and put a lot of pressure on myself so tend to avoid it and instead give back directly to the PF community by becoming a research and communicating directly with those affected.
Sharing your stories with local media is important if you want to get word out, using social media and encouraging an open conversation with those who come across and are interested. Attending big charity drives like the sponsored walks or encouraging fundraising and awareness activities within the workplace. The possibilities are endless really.
Personally speaking I am more akin at devoting a large portion of my working life to research and hopefully by getting and staying involved with the community this way as a support since Dad is no longer here anymore. I do find it exhausting and sometimes quite disheartening so I am careful at how much responsibility I put on my shoulders, has anyone else felt this when it comes to dealing with the lack of awareness?
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Hello Kate, thank you for reading and commenting. You are correct on so many areas of your comments. The funding is a necessary evil in order to conquer this disease. I feel the lung connotation has a negative effect on people as they think people who have lung problems have them because they were smokers. We know that to be untrue, although some may have smoked many have not. You also should not shoulder too much responsibility. It will eventually tear you down. The pulmonary fibrosis foundation does an excellent raising awareness and private funds for research. The NIH in the U.S. also supplies grants for research but apparently this is not enough because there is still no cure. There are some clinical trials in place that are at the least giving us hope for a cure. You also don’t have to participate in organized funding activities to bring awareness, you are doing that by participating in this forum and your working life. I’m also assuming you speak to people whenever you have the opportunity to tell someone your story or to offer your help. By your writing we can tell you are passionate about this disease. Thank you Mark
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@mark-koziol,
Both I and my oldest child are beginning to advocate for IPF. My daughter actually started a request on social media for her friends for her birthday to make a donation to Pulmonary Fibrosis Foundation. A few of her friends have made contributions as well as I have. She also ordered PFF bracelets to give to family and friends. My daughter is in the medical field but she was not familiar with IPF. Very few people I have talked to have ever heard of it and have no knowledge about it. Since I have not yet attended local Pulmonary Rehab I don’t know if there are others in the Columbus area living with IPF. We are trying to get the word out. I have not used social media to talk about IPF but I have talked to family and friends about it. I will continue to do what I can to raise awareness about this disease.
Marianne
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Hello Marianne, The Pulmonary Fibrosis Foundation is probably the most respected non profit organization. I think it is an excellent choice. I am posting a link for the OSU medical centers PF support group. Take care
https://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care
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