February 12, 2018 at 2:23 pm #11096
For those of you who have visited, registered and contributed to topics on the new Pulmonary Fibrosis News forums, thank you! As a member of this newly launched online community, you are helping to create a platform that unites patients, caregivers, friends, family members, advocates, researchers and medical professionals who have one common goal: eliminating pulmonary fibrosis.
If you aren’t aware of this new initiative, please take a look around the forums. Registration is free — just create a profile and you can read and contribute to a variety of different topics that might impact someone living with PF or someone caring for a loved one with the disease.
For the members who have joined, it would be wonderful to hear your thoughts. Below are some suggestions to help you navigate the forum and what to do once you have registered and created a profile.
Join a forum
There are some forums that are targeted to specific roles, such as private and separate forums for patients and caregivers/spouses. There are also forums that welcome anyone in the PF community, regardless of role, location or age. The forums will continue to evolve and be inclusive of anyone touched by PF as members are suggesting new ideas each day.
Contribute to a topic or start your own!
Within each forum are topics and discussions that involve both members and the moderator. These topics can be about anything that’s on your mind, from something you’re questioning to something you’re seeking advice about. They can also be posted to connect with others who might be in a similar stage of the illness as you are, such as preparing for lung transplantation or just diagnosed. There is no topic too large or small for the forums, and everyone’s contribution is valued and welcome.
Join a group
The groups may seem strikingly similar to the forums, but they do in fact have significant differences. The main difference is groups are designed to bring people together who have shared interests, or who are interested in one particular subject area. It is also meant to group people together who have similar roles within the PF community, such as researchers or people who are caregivers or spouses of someone living with PF. Groups can also be made private or public, which can encourage members to share more openly online about their experiences of living with a life-threatening illness if they know their post will be protected within a trusted group of individuals, such as all PF patients. Members can also create their own groups.
Privately or publicly message another member
This feature is similar to other social media platforms where you can reach out to someone publicly (similar to a Facebook post) or privately (direct message). Perhaps a member contributed to a topic or started a discussion that really resonated with you, and you would like to learn more. You can private message them to connect directly about what they’ve shared. So far on the forums, this feature has been used for members to connect with the moderator to ask specific questions or to request forums or topics to be started that would be of interest to them.
Add a friend
Many members have shared where they reside in hopes that local networking can take place. Regardless of geographical proximity, some members will form more natural relationships with others and the “add a friend” feature offers a way for those people to keep in touch easily and more frequently. This is similar to having a friend on Facebook or Instagram, as they will see updates and posts that you have made. It’s wonderful to see new friendships beginning to form.
We look forward to having you join us!
March 18, 2018 at 11:07 pm #11502AnonymousInactive
If I do not want to receive email notifications of forum entries, how do I change that?
March 20, 2018 at 1:24 am #11504
Good question! You should be able to go in and change your profile settings by clicking on your name in the top right panel of your screen. Once you click on your name, it will bring you to your profile and you can change your email preferences in the ‘settings’ section. Let me know if you need further instructions Scott and I’m happy to help out.
March 10, 2019 at 7:10 am #17520lyndaParticipant
Hi Charlene! thanks for the welcome. I am trying to ask about others experiences with using care center hospitals vs private pulmonologists but cant seem to be figuring out how to do this site correctly? Can u help quide me please?
March 10, 2019 at 8:20 pm #17544
Sure, I’d be happy to help you! What an interesting topic, I’m sure others will contribute and be interested to hear the answers to this topic discussion. You did a great job getting this post to go “live” as I received notification that you commented 🙂
You’re essentially going to do the same thing, but in a different forum and you can start a new topic. Here is the list of forums you can choose from: https://pulmonaryfibrosisnews.com/forums/ … when picking which forum I want to post my discussion topic in, I think of the audience I am trying to target. As an example, if I am posting a topic pertaining more towards young adults I’d put it in the Young Adults Living with PF (Under 40) forum, but if I am posting a topic that could technically apply to anyone OR you want a number of people to share their experience, you can pick another forum. Usually my go-to forums for this type of content is either Join the Discussion: Welcome to all IPF/PF Patients or Diagnosis Information and General Questions. Once you’ve selected which forum you want to post your discussion topic in, just click it and then scroll down to the bottom where there is a text box that says “Create New Topic”.
From there, you give your topic a title and then post your question to the group in the text box and hit submit. It will show up on the activity feed, giving others an opportunity to share their thoughts, experiences or answer your questions. Does this help at all? Let me know and I’m happy to provide more clarification for you!
Take care and thanks for being part of our community!
March 14, 2019 at 2:09 pm #17696David SwainParticipant
Good morning @charlenemarshall. I joined PF. News and set up my profile a few months ago. However, I can’t work out how to insert my profile photo. After selecting my photo, editing size etc. I’ve hit a block. Can’t see any means to next step. Can you help, please? David
March 14, 2019 at 8:15 pm #17721
Sure @davidaswain, I’d be happy to help!
You should be able to upload your profile picture using the following steps:
1. click on your name to the top right-hand side of the screen, which should take you to your profile.
2. Then, among the “buttons” under the circle where your profile picture would go, you should have an option to click on “profile”. The list of “buttons are: Activity, Profile, Notifications, Messages, Friends, Groups, Forums.
3. Once you click on “profile”, smaller options become available right underneath the black profile button and one of those options should be “change profile picture”.
4. Once you click that, you should be prompted to upload your photo from your computer and size it into the circle that will be your future profile picture. Make sure the photo isn’t too large, sometimes that causes problems. Then you should just be able to save and it’ll appear on the main page.
Is this helpful, or am I just repeating all the steps you’ve already tried? If so, I’m sorry about that and can to figure out other solutions for you 🙂 Let me know!
March 14, 2019 at 11:25 pm #17723David SwainParticipant
Hi Charlene. Thanks for your reply about my profile picture. Unfortunately I still haven’t been successful. Following all your steps until the final save; there is no save button to finalise the change.
I’m so happy to hear you’ve made your booking to Hawaii. Now you are committed, you can start the exciting part of planning in detail. I’d love to go to Hawaii, but all our future long trips will be to NZ.
Best regards David
March 15, 2019 at 12:49 pm #17747
Oh, that is strange that you can get through all the steps to the end but not save the uploaded profile picture! Are you using a clear photo of your face? This sounds like a silly question but I wanted to upload a photo of me standing, overlooking the ocean initially but because it wasn’t clear of my face/who I was, the site picked it up as spam and wouldn’t let me use it so I changed it to the current one I am using. My other question is (hopefully it isn’t confusing…) what web browser are you using? As an example, I have two web browsers on my Mac computer (Safari and Google Chrome). Sometimes if something is ‘wonky’ with one, I try the other. Can you do that if you have more than one web browser? Let me know if you try these things and they don’t work, and I’ll get our tech team on a solution for you!
Yes, you’re right: Hawaii is booked… no turning back now and I am so excited! I hope to spend some time planning this weekend, but really don’t need to rush as I don’t leave until Sept 25th 🙂
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