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  1. That time again. Just got my CF walk information for the Cleveland Zoo on 5/14 and figured it would be a great time to make yet another thread. Below is a photo from last years walk and a couple others. Also put in some info about my girls the past year. thanks for taking some time to read through the thread. Update from my wife's CF page. Every year, our family walks to support the Cystic Fibrosis Foundation. Before the age of 1, our twin daughters were diagnosed with CFTR-related metabolic syndrome (CRMS). What is CRMS ---> http://www.cff.org/aboutcf/testing/genetics/crms/ They do not have cystic fibrosis. They have one CF causing genetic mutation and 1 variant mutation that when paired together may cause mild cystic fibrosis in the future... (breathing or gastrointestinal issues caused by thicker mucus in thier bodies). Reagan and Alexis saw their pulmonologist in August. At that time, their first lung function test showed some changes, despite another year of minimal symptoms. We spent many meetings discussing and deciding a course of action. The girls visits were increased to every 6 months. In the meantime, a nasty respiratory virus had them coughing for weeks. In August we were also given updated sweat testing results as we were somehow given only Alexis' results in 2014 and not Reagan's. Those diagnosed with CF have levels that are higher than 60. Healthy individuals score less than 30. Reagan scored 61 and 52. Alexis scored 49 and 51. Their pulmonary testing in January continued to show mild changes (similar to those in August), but confirmed. The girls will probably be having CT scans this coming summer of either the sinuses or lungs. If either show signs of cystic fibrosis, our pulmonologist has discussed giving the diagnosis of atypical CF and starting lung treatments. They are having no stomach issues or weight problems at this time. Our children's diagnosis has opened our eyes to the devastating effects of this terrible disease and we want to help bring a cure to those who are suffering from this illness. Your donation can help develop life saving curative treatments and medications. ANY donation is welcome and VERY appreciated. Thank you!!! Click the link if you would like to know more about CFTR related metabolic syndrome. http://www.cff.org/A.../Genetics/CRMS/ any donation is greatly appreciated. even if its a couple bucks!!! thanks dudes and dudettes. http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1774452&pg=personal&fr_id=4805
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