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    • #24819

      I recently made a forum post asking members to comment on their process of getting diagnosed with pulmonary fibrosis (PF), based on a news article called Lag Between Recognition of IPF Symptoms & Diagnosis. Unsurprisingly, everyone’s experience in getting diagnosed with this complex interstitial lung disease was vastly different. There are a number of physicians, researchers and advocates around the world working hard to streamline the process of diagnosing IPF faster and earlier. Many studies have revealed that the earlier a patient is diagnosed with IPF and given one of the two anti-fibrotic therapies for the disease, the better they can manage their disease. And yet,  few ILD patients are diagnosed correctly the first time they seek medical care for their symptoms.

       

      BioNews Insights recently conducted a survey on our homepage and the forums platform, trying to better understand the process of being correctly diagnosed with IPF and those who are misdiagnosed. The graphic below reveals data from those of who you completed the survey (thank you!) regarding your diagnosis process. While the overall rate of those being diagnosed correctly the first time (71.67%) is promising, the fact that the majority of those who weren’t (28.33% or nearly 1/3) were misdiagnosed for over a year needs improvement!

      In an ideal world, we’d love to use this information to start conversations and help physicians improve their diagnosis process, aiming to reduce the number of IPF patients being misdiagnosed.

      Interested in lending your voice to this survey?

      Click here to take the survey

       

      Do you have any tips that helped you receive your IPF diagnosis quickly?

    • #24885
      Mary Echberg
      Participant

      I was denied access to completing your survey. Maybe because I live in Australia. I was diagnosed with IPF in October 2015, my treatment consisted of CPAP machine, oxygen and cortisone puffer twice daily. I asked about pulmonary rehabilitation and the use of the antifibrotic drugs (On several occasions) and was told by my respiratory physician I didn’t need them.  In March 2018 I obtained a second opinion only to find I did not have IPF but Interstitial Lung Disease of no known origin, but, probably related to a history of smoking 20 years ago. I have undertaken  pulmonary rehabilitation, diagnosed with asymptomatic gastric reflux (contributing to my cough +++) which will be operated on this month, and then I will start one of the antifibrotic drugs.  The corrected diagnosis has had a positive impact on my mental health.

    • #24887

      Hi @mary-echberg ,

      Thanks so much for writing! Yes, unfortunately due to GDPR (data protection regulations) we can only offer survey participation right now to US residents. Thank you for being willing to contribute though, I wish I could as well but can’t as a Canadian citizen. I appreciate your willingness to help us though!

      I’m really glad you sought out a second opinion which has been good for your mental health, way to advocate for yourself 🙂 Sorry to hear the first respiratory physician didn’t provide you with the things you inquired about that would help you. That must have been tough, but I’m glad you’re able to do pulmonary rehab now and can start the antifibrotic therapy drug to slow down the progression. Wishing you well on your upcoming operation and thanks for sharing.
      Sincerely,
      Charlene.

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