Have You Joined the Pulmonary Fibrosis News Forums Yet?
The Pulmonary Fibrosis News Forums is celebrating its first birthday this month.
As a forums moderator, I wrote information-focused columns ahead of the launch in early 2018 to give people an idea of what we hoped to achieve with this new initiative. I didn’t foresee how successful the forums would become and the many benefits of being part of this amazing and supportive online community. I know many others share my perspective, as some forum members have told me how meaningful this space is for them, too.
While our forums were designed to complement other social media groups by focusing on support, research, and patient engagement for those living with pulmonary fibrosis (PF), I believe our platform is a unique one. We have a moderator available to engage with patients and post new content. An incredible blend of patients, caregivers, allied health professionals, researchers, and even a few physicians regularly access our site and get involved in discussions. Content ranges from emerging research and alternative treatments to diagnosis and lung transplantation.
Our forums are different because all of these discussions, no matter how commonplace or unusual the topic, are met with support, mutual respect, and kindness I have not found anywhere else online.
Following are other reasons that the forums have become a haven for me as a patient with idiopathic pulmonary fibrosis (IPF):
- A platform to make new friends: I have been privileged to form new online friendships as the moderator of the PF News Forums. I have been fortunate to discover people living near me and others who are patients at the same treatment facilities. I have met up with patients in person and spoken to others using video chat.
- Unique discussions take place: My friends and family try their best to understand my experience of living with a life-threatening lung disease as a young adult, but they can’t comprehend fully. Folks on the PF News Forums genuinely know what I am going through. I feel less alone and know my comments about some of the harsh aspects of this disease won’t be viewed negatively.
- Alternative therapy ideas: While we cannot endorse or encourage the naturopathic or alternative therapy ideas raised by members for the treatment of IPF, it is interesting to hear others’ experiences. I believe patients should be free to try any treatments to manage their disease, as long as those therapies aren’t harmful to themselves or others. Unfortunately, there is no cure for IPF. I know patients who say alternative therapies such as class IV cold laser therapy, have helped them. The forums are an excellent place to gather information and discuss some of the less traditional ways of managing this disease.
- Emotional support: Since people access the forums from around the world, it is rare to sign on and not find someone else online. I have connected with people during sleepless times or when I am feeling particularly anxious. It is nice to know that others who truly “get it” are on the other side of the computer screen. The emotional support I have received from the forums has been incredible. I can’t imagine my life without this community of support.
These are just a few of the benefits I have experienced from the PF News Forums; there are many more.
Does this seem like something that’s of interest to you? Check out the forums and join for free here.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Sandi
HI Charlene
for a long time I have wanted to participate, but my email got mixed up and I can;t seem to re register -- my husband, Richard, is now on OFEV for 3 months, and now a candidate for lung transplant, We are with Kaiser in So Ca --
I think the mistake is originally I entered my daughter's email [email protected] -- but I would like to participate in my email [email protected] -- can you help me??
we gain so much strength from reading all your entries and would like to contribute and participate if we can figure out how to re register thanks Sandi
Charlene Marshall
Hi Sandi,
Thanks so much for reading my columns and for getting in touch with me. We'd love to have you participate in the forums, and I am so sorry it seems as though your email got mixed up a bit. Let me see if I can find a solution to help you with this, as our tech team may be able to swap out the emails and ensure your email ([email protected]) is connected to the forums. If so, you should start receiving emails soon! If not, any chance you'd join again with your email? You can sign up here: http://pulmonaryfibrosisnews.com/forums/
I'll see what I can find out for you, but if I can be of more help, feel free to email me directly: [email protected]. We'd love to have you join us, and sending nothing but the best for your husband on his transplant journey. Please let me know how he is doing :)
Charlene.
Dennis Eliassen
Charlene, I am having a hard time getting on the forum site. It won't take my password and I am getting emails from different. Any suggestions?
Denny 248-5050463
Charlene Marshall
Hi Denny,
I am so sorry to hear this, how frustrating that must be since I know how much you're valued on the forums. I just sent the issue into our tech team to see if they have any solutions. Are you getting emails from the forums to a different email, do you mean? Do you use more than one browser on your computer? If so, can you try on a different browser and let me know if it works for you then? I can check the back-end for you and see if anything is wrong with your email or account, but I can't imagine it is. Let me know if a new browser works, if not I'll see what Joe can recommend.
So sorry about this!
Charlene.
Virginia Juarez
I have been diagnosed with pulmonary fibrosis since April 2009, I have learn more about pulmonary fibrosis on this site than others. Thank you ?
Charlene Marshall
Hi Virginia,
Thank you so much for reading my columns and for all of your kind words regarding the forums. So glad they're helpful for you and other patients - we set out with a goal in mind of helping to support other patients with IPF, and I'm so glad others feel that the forums are indeed helpful. Thanks for being part of such a wonderful forums community online!
Take care,
Charlene.
Katherine Broach
signed up long about but can rarely sign in. i can still read items but can't comment or ask questions. usually i just give up trying.
Charlene Marshall
Hi Katherine,
Oh no, I am so sorry to hear this! I just asked our tech team to look into this for you, as I can only imagine how frustrating it is. We have had some issues since an update to WordPress which is causing us a lot of issues. Can you re-register for the forums using the email address above and see if it works? Our tech team can't find your registration. Or, did you get the confirmation of registration link that is sent to you automatically after you register? Please let me know and I am happy to continue to help you.
cheers,
Charlene.
Dania Parisé
Quelqu'un a trouvé quelqu'un qui donnait les traitements au laser froid au QUÉBEC (canada)....merci
Charlene Marshall
Bonjour Dania,
merci d'avoir lu mes chroniques et d'avoir communiqué avec moi via les commentaires. En ce qui concerne le laser au Québec, veuillez consulter ce lien pour voir si vous pouvez trouver un fournisseur près de chez vous: https://summit-chiropractic.com/laser/
Si vous êtes sur les forums PF, n'hésitez pas à contacter Dr. Hall à propos d'un fournisseur proche de vous. Meilleurs voeux,
Charlene.
Cheryl R
I requested to join but got an email that I was declined membership in the forum...so I’ve just ignored it ever since. My husband has been an IPF patient since 2007.
Charlene Marshall
Hi Cheryl,
Thanks so much for getting in touch regarding this, I am so sorry to hear your membership was declined for some reason! How frustrating that must have been for you. Can you tell me approximately when this was? It shouldn't have happened and it looks like we're running into issues with people trying to sign in to the forums now, per a few other comments here. I'm looking into this ASAP with our tech team - unfortunately this latest update caused such havoc to our site, and it is acting strange. Let me know if I can help fix this for you. If you re-register, please email me: [email protected] and let me know so I can ensure your request is approved right away.
Best wishes to you and your husband.
Warm regards,
Charlene.