Why Join the Cystic-Fibrosis.com Online Community?
Community comes in so many forms. For some of us, it can be easy to think that the only way to receive support or education for cystic fibrosis is from other people or from books, but the Internet is quickly changing just how much we can receive from an online community.
An online community for those affected by cystic fibrosis
To hear more about your experiences and why you come to Cystic-Fibrosis.com, we reached out on our Facebook page and asked, “What are the primary reasons you visit our page?”
More than 300 of you commented on this hot topic! Here is what you had to say.
“To see what is new in research”
One of the most popular responses is that you come for up-to-the-minute information about the diagnosis and its treatment methods. As some of you shared, you are finding that books are not as current as you would like, whereas websites like ours are able to post news and opinion pieces about new treatments as they become available.
“To see what’s new in research.”
“For new updates in treatment.”
“Thank you for all the info and pictures!”
“Your site is full of information. There are not many up-to-date textbooks available in the library.”
“To connect with others”
No one wants to feel alone in their struggle, whatever it is. Rather, we feel much better and gain more hope when we know that there are others who know first-hand the same pain we do. Sharing your personal experiences is one of the best ways to connect with others and feel that sense of support and community. Many of you live in areas where you might find it difficult to find other people with CF, so connecting online becomes such a great option to find so many people who understand exactly what you or your loved one is going through.
“I have CF and am 54. I have never talked to anyone else who has CF until a couple of years ago when I met someone through FB. Where I receive treatment, I am the last patient of the day and cannot interact with any other patients, so it is nice (and sometimes sad) to hear other people's stories.”
“To hear people’s stories.”
“To learn more and connect with others.”
“My brother has CF and I like learning all I can”
There is no question: There is a lot of love on this site. So many of you are here because one of your loved ones has CF. You have expressed that you are here to learn more about their experiences to understand them better. This shows such an incredible amount of kindness and compassion. You and they are lucky to have each other! Likewise, some of you are referring your loved ones to info on this site so that they can gain a better understanding of CF.
“To learn more and read other people's stories. Two of my three children have CF.”
“I have two grandsons with CF. I try to learn everything I possibly can about this condition and its treatments.”
“My brother has CF and I like learning all I can.”
“Your page has good information for the cystic fibrosis community, and I like that I can share with family and friends on Facebook so they can understand more about CF.”
Support comes in many forms. It might look like understanding, or it might look like encouragement. Whatever it looks like for you, it sounds like many of you are finding it here, and we are very grateful for that. It is also lovely to see that there are just as many in the Cystic-Fibrosis.com online community who come to receive support as there are those who come to give it.
“To see if I can leave an encouraging word to those suffering, in memory of our son, Matt Austin.”
“My husband has CF. There are not many support groups around. It is nice to read the stories and get others opinions.”
Thank you for being here!
We are grateful to every one of you who shared your thoughts for this story and on an ongoing basis to make this community possible. Thank you.
Are you a member of our page?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?