Ah, So Many Points of Light in a Patient Community!

Imogene

Administrator
Patients joining the conversations at a site like cysticfibrosis.com may come with hesitation. They wonder if they’ll hear things that are too scary. (There is a good chance their own health care providers told them that)!
Patient communities aren’t for all patients and care givers…but for many the opportunities to learn something new in personal, concrete, and targeted conversations is enough to keep them coming back for years.
They may find ways to ease the burdens of complicated treatment schedules. They will learn about new medications from patients who are experiencing them real time. They may just lurk (we have up to 2000 lurkers daily….reading and learning) or they may be brave and join in, ask questions, and even become senior members freely offering advice and lovingly answering the same questions that pop up weekly for years…(How to clean a nebulizer for instance.)
There are daily so many AH HA moments in the sharing of similar stories.
Moments that have been said…”Saved my life!”
That is why cyticfibrosis.com continues in our in our 18[SUP]th[/SUP] year of “lights on”.
 

Jane

Digital opinion leader
Congratulations Jeanne!
Put me in the "saved my life" category. When my boys were at their sickest, it was the members of cf.com who provided some answers and lots of support to get us through the low times. It is a wonderful, loving, hopeful community. I consider members of this site my family.

Thank you Jeanne for continuing to provide this important resource. People don't realize how hard you work and network on our behalf- remarkable!

Love to you my friend <3
 

Imogene

Administrator
thank you both...the community matters! And both of you are brave ones who help others to cope and and have hope!

Jane, I remember those scary times with the boys! We all prayed hard too. It is wonderful to watch them grow.

See you soon Stacey!
Salt and Light and Love,
Jeanne
 

azdesertrat

New member
There was awhile that I was a 'lurker', but given my personality, I knew it wouldn't be long before I jumped in with both feet. I've had several people offer me advice & give me pointers I never would have thought of. I'm forever grateful for that. Its really cool to be able to correspond with people who suffer the same ailment. This is the first time I've ever conversed with anyone else who had CF. All my life, I've never made an effort to seek out other CF'ers. I just never had an urge to 'wallow' in it. I've changed a bit since then. I don't believe that corresponding with other CF'ers is 'Wallowing in It'. Now I see it for what it is; just sharing personal experiences with others in the same boat & trying to benefit from these other CF'ers. Thank you for providing this forum. This is the first one like this I've ever been fortunate enough to find. Sorry folks, you're stuck with me! Unless I say something so offensive I get kicked outta here, I'm here to stay. I promise I will never intentionally offend anyone. All I want to do is give & receive good advice & hear of the struggles of all the others so 'lucky' to have CF. Thanks again & may God bless & be with all of us.
 

Imogene

Administrator
Lurkers are so important! Not everyone can jump in...But all are in the learning curve!
Thanks for being with us...and saying a prayer!
 
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