Patient perspective on ILD and pulmonary fibrosis (ahead of Christmas 2023)

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Sharing some patient perspectives on having pulmonary fibrosis / ILD and how to cope with accepting the diagnosis and to focus on the things that you can still do. Hopefully some encouragement to keep going before the holiday season 2023.
I do hope that I managed to convey some of these messages in a correct and respectful way, but it is always hard for me to speak as a doctor on behalf of patients who are actually dealing with their illness day-to-day. I do feel however that the patient experience needs to be heard by others as well, and that was my goal with this video. I sincerely hope no one was offended by this video, and instead you found it encouraging.
I do hope you are able to find the appropriate support in your local area.
Please leave comments below if you want me to cover other topics in ILD.
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The opinions presented on this channel are my own and do not constitute medical advice in specific cases. If you are watching/listening to this content as a patient, you must seek personalized advice from your own healthcare team (who can provide you with a consultation and appropriate treatment and advice. This information presented here may not apply in your case. If you are a health professional, please use your professional judgement when treating patients.

Опубликовано:

21 дек 2023

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Комментарии : 8

@garymensurati1631 7 месяцев назад

Thank you

@adalai7649 7 месяцев назад

Great video! I was just recently diagnosed with PF and we're still in the phase of seeing if we can identify the cause. I know that PF can't be reversed, but identifying the cause might help provide a treatment that can maintain a good quality of life. I've surprised myself with the sense of peace and acceptance I've had with my diagnosis. It's actually created a great basis for discussion with my family. My daughter is getting married in September and this brings great joy to me and my ability to be there is even more precious for both me and my daughter. I am also getting even more joy in my hobbies of knitting and crochet... And the stash of gorgeous yarn that is even more special to me now. Like you, my pulmonologist is really pleased to see my response and we are really enjoying our meetings and discussions. I am also inspired to read everything I can in PF, ILD, etc., and your channel is really helpful in helping me understand it better. But, overall, I agree that a positive outlook is really important and so very helpful!

@cookie-gb3xn 7 месяцев назад

Thank you ❤ I'm still stable

@jackielooseley79 4 месяца назад

Thank you for your videos The treatment u have recieved has been just as you have explained. So I understand much more. I am now living in Spain and waiting to see a consultant now I'm now much more informed to help and interact with him/ her

@dianeleohner3916 7 месяцев назад

Thank you so much Dr. Stephan for your videos! They are so helpful to me. God bless you for all you do. Merry Christmas and may we all have a healthy and happy 2024!

@viktoyagordon7901 7 месяцев назад

Thank you Dr Stefan , once again I have learned something new about my IPF. My GP makes me feel like my illness is nothing to worry about , you on the other hand make me feel different, my specialist has not given me any indication of the severity of my condition. Thanks again for your informative videos. Cheers Vicky

@user-yb7lt2qj1j 7 месяцев назад

I think what you said was good to hear. I hadn’t ever heard of this disease till I was diagnosed in 2021. In 2020 I had a round of radiation treatment for stage 0 breast cancer.I retired from my job in 2022. My husband died of esophageal cancer in 2019. I am glad one of my sons stay close by. My daughter is at home with me. She is 34 and developmentally disabled. I’m trying to find a suitable place to live. My son is unable to have her live with him. I have a hard time trying to find something to look forward to.

@pmartin7397 7 месяцев назад

My consultant insists its Idiopathic Pulmonary Fibrosis because he's found no cause. I picked up Covid in late 2019 in a GPs waiting room. No records of this were sent to consultants. Therefore, he diagnosed " Idiopathic " ! 3 years later I'm getting treatment. It's hard to be positive.