aviolentworld Posted May 28, 2011 Share Posted May 28, 2011 just found out my daughter reagan has cystic fibrosis. considering my daughter's are identical twins i am assuming alexis has it as well. apparently they test for it on the newborn blood screening and reagan was in the top percent of babies born that day so more testing had to be done. after 4 inconclusive sweat tests they drew blood and it came up positive. just had to post this shit somewhere to get it off my chest. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 28, 2011 Author Share Posted May 28, 2011 shit i can't even post in the right forum can a mod move this Quote Link to comment Share on other sites More sharing options...
stbarric Posted May 28, 2011 Share Posted May 28, 2011 Hey man, my cousin has cystic fibrosis, he was diagnosed years ago and is still staying strong. Stay strong my man Quote Link to comment Share on other sites More sharing options...
exitenglish1208 Posted May 28, 2011 Share Posted May 28, 2011 man i'm so sorry. I know what i say can't really help but the prognosis isn't necessarily that bad, often times it presents in a relatively mild way (i dont mean to belittle the disease in any way here). I actually am working in a CF/PCD lab this summer and my dad and boss have done a ton of research on it at UNC. Again, i'm sorry and stay positive Quote Link to comment Share on other sites More sharing options...
monsterrod Posted May 28, 2011 Share Posted May 28, 2011 Stay strong, man. Here's hoping everything turns out for the best. Quote Link to comment Share on other sites More sharing options...
almightyseancore Posted May 28, 2011 Share Posted May 28, 2011 =\. as a fellow father i feel for you. bad things happening to your kids is the worst. i hope you find a special place in your mind that allows you to handle this without any mental or emotional instability. Quote Link to comment Share on other sites More sharing options...
adambomb Posted May 28, 2011 Share Posted May 28, 2011 My friend mike started a foundation called punk vs fibrosis and has raised thousands of dollars in donations to help find a cure . Most of the shows he's booked have been in the northern jersey / lower NY area . I know he has reached out to other folks throughout the country to try to make the foundation larger and spread awareness . I could give you his information if you wanted someone to talk to who is passionate about finding a cure . Quote Link to comment Share on other sites More sharing options...
Guest obzen Posted May 28, 2011 Share Posted May 28, 2011 I hope everything is ok! Best to you and your family! Quote Link to comment Share on other sites More sharing options...
mclz Posted May 28, 2011 Share Posted May 28, 2011 http://www.esiason.org/index.php/bef/home/ Boomer Esiason's son has CF and he started a foundation for it. Best of luck. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 28, 2011 Author Share Posted May 28, 2011 thanks a ton for the well wishes guys. adambomb i will shoot you a pm. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 28, 2011 Author Share Posted May 28, 2011 man i'm so sorry. I know what i say can't really help but the prognosis isn't necessarily that bad, often times it presents in a relatively mild way (i dont mean to belittle the disease in any way here). I actually am working in a CF/PCD lab this summer and my dad and boss have done a ton of research on it at UNC. Again, i'm sorry and stay positive yeah i am still trying to understand this disease. they said with the genetic mutation they found that it's more mild case and that they should lead a pretty normal life with having symptoms later on down the road. right now they are healthy as can be and its just hard to think that they may or may not have complications later on. its crazy that only one had to be tested considering they are identical twins. they also said during the first sweat test that if they were born in another state that reagan wouldn't have to take the sweat test for CF. i guess percentages vary from state to state on the newborn screening. Quote Link to comment Share on other sites More sharing options...
controlthebleeding Posted May 28, 2011 Share Posted May 28, 2011 friends dad has mild cf... dude's 55. but good luck with everything. i can't imagine what you are feeling like right now but a good chunk of us are here for you if you need to vent. Quote Link to comment Share on other sites More sharing options...
jhulud Posted May 28, 2011 Share Posted May 28, 2011 Mark, I can't even begin to imagine what you're going through with this now. I extend my sincerest best wishes and luck for everything to work out. We're here for ya to vent to, get it off your chest, and just anything else...we're still a community...at least the few old and jaded VC old-schoolers...and look out for each other in some way, shape, or form. Stay POSI my friend! Quote Link to comment Share on other sites More sharing options...
lipmyreeds Posted June 3, 2011 Share Posted June 3, 2011 Real sorry to hear this. I participate in a local CF charity kickball tournament every year to support our local CFF's efforts to help find a cure and provide resources/quality of life for kids with the disease. Get to meet a lot of brave kids every year. I'm sure you already know, but Ohio has a few chapters. Best of luck - the quality of life for people with CF is really improving and who knows, a cure might be just around the corner. http://www.cff.org/aboutCFFoundation/Locations/FindAChapter/index.cfm?state=OH Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted June 3, 2011 Author Share Posted June 3, 2011 Real sorry to hear this. I participate in a local CF charity kickball tournament every year to support our local CFF's efforts to help find a cure and provide resources/quality of life for kids with the disease. Get to meet a lot of brave kids every year.I'm sure you already know, but Ohio has a few chapters. Best of luck - the quality of life for people with CF is really improving and who knows, a cure might be just around the corner. http://www.cff.org/aboutCFFoundation/Locations/FindAChapter/index.cfm?state=OH yeah thanks man. i know my wife has a gotten a ton of recommendations on websites from a board she posts on. Quote Link to comment Share on other sites More sharing options...
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