Interested in hearing anyone's experience with a diagnosis of adult onset cystic fibrosis. Where you misdiagnosed at first? Where you healthy as a child? When did you start getting sick as an adult? How severe was the progression of disease by the time of diagnosis? Do you also have COPD? Does the cf affect your pancreas or just your lungs? Anyone have infertility issues that led to the discovery of the DF508? And how many years passed before you had symptoms that led to a diagnosis of adult onset cf? Will you share the combination of your cf gene mutation? Are you seeking care from a cf center? How fast has your disease progressed?
A family member was diagnosed 20+ years ago with df508 when trying to have a baby. The gene mutation was the cause of his infertility but he was told back then it would not turn into full blown cf. Two and a half years ago the second gene (a rare gene) was discovered while being assessed for a lung transplant. This particular gene was not even discovered by the cf medical research community till around 2003. Early on The specialists thought His lung disease was only caused by COPD so they did not do a gene test even though they knew he already had the df508. We repeatedly brought it up in dr visits...could this be CF ? It sure sounds like a person with CF. but we were told no. I wish back then I had searched the Internet for answers because after the diagnosis I saw nothing but studies related to adult onset cf. may an earlier diagnosis with appropriate cf medication might have slowed the lung disease.
Thanks for sharing your experience.