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CysticLife - A Cystic Fibrosis Community - Faq Site
FAQs
Why should I put my personal information, like my PFTs, medicines used, and weight on my profile?

We at CL believe that knowledge is power. The more information we have, the more we can do. Since this site is based on members opening up about themselves to help the community learn and benefit from each other, we encourage people to provide as much information about themselves as they feel comfortable disclosing. The CF community can grow in understanding, learn from one another, and ultimately benefit from sharing struggles and successes with one another.

If I have a profile, do other members of my family need one as well?

The more people participating in the conversation, the more perspectives the conversation will have. The CF community is a small group of people, so we need as much insight as we can get to expand our knowledge of how to live with the disease and strengthen the small community that we are. Please encourage any and all family members to get involved. As we say at CL, "join the cause. be the cure".

Where can I find medical information?

CL is full of information from individuals' personal experience with CF. If you're looking for doctors' opinions and hard facts, please go to the Cystic Fibrosis Foundation's Web site at cff.org. They have a plethora of medical information that has been generated by medical personnel and researchers.

How do I search for people or topics?

You will find a Search box in the top, right corner of all pages within the social network. Simply type the key word(s) you're interested in and hit "search".

What is my "Relation to CF"?

When we ask, "what is your Relation to CF?" we are asking, "how are YOU related to CF?" or, in other words, "how are YOU related to the person with CF?" If you're a mom of a CF child, your relation to CF is "mom". If you personally have CF and are female, you are a Cyster; male with CF, you are a Fibro.

How are polls used?

Polls are a great way for members to get answers to questions or give answers to questions quickly. In addition, CysticLife and our Research Advisory Board will use polls to identify key areas of potential research.

How can I get involved with CL?

Email us at info@cysticlife.org. We would love to get you involved in any capacity.

Have a question that wasn't answered here? Contact us at info@cysticlife.org or click Contact Us at the bottom of any page.