be under diagnosed. The risk participated in the study are increases with age. Treatments willing to speak about their for the symptoms include oxygen experience with the disease and therapy and pulmonary how participation in the study rehabilitation, but there is no affected their quality of life. effective treatment for the constant cough, which is a hallmark of IPF. Life expectancy after diagnosis is only about three the cough clinic session very “Found to five years. The only cure is a will be good if we can get Drug helpful as met others with same “It lung transplant. Companies to become more problems. Also heard about involved the digital stories sound different Potential treatments and – the results were “Although a great idea. I would be happy to be ongoing trials would recommend significant, this was a small study involved with the stories.” anyone to come along and join in. and we believe that a larger It’s informal and friendly and will is warranted to confirm these we can learn from each other “If help in future with GP’s awareness, promising results and also assess and/or professionals how to better etc. the drug’s impact on the disease manage our cough, it will be a big itself,” says Horton. have help.” “We Can sometimes along a partner some hope that this therapy may or family member as they give was great to be able to meet be able to slow the progression of “It support and sometimes know how other people in the same situation IPF, but that would have to be hard it is to live with a ‘cougher’!” and talk about things. It was good tested in a larger study.” to know we are not forgotten about to hear stories from “Interesting and that research etc is being done other people. Found that symptoms The study authors are: Maureen and have things explained.” varied greatly. Would like to meet R. Horton, MD; Victoria again. Public should be made more Santopietro; Leena Mathew, BS; aware of the condition Karen M. Horton, MD; Albert J. ‘Reflux cough’. Travelling on the tube and Polito, MD; Mark C. Liu, MD; the cough starts one feels like a Sonye K. Danoff, MD and Noah with all the dirty looks one ‘leper’ Lechtzin, MD. gets.” -JHM- Note: Patients with idiopathic pulmonary fibrosis who
be under diagnosed. The risk increases with age. Treatments for the symptoms include oxygen therapy and pulmonary rehabilitation, but there is no effective treatment for the constant cough, which is a hallmark of IPF. Life expectancy after diagnosis is only about three to five years. The only cure is a lung transplant. “Although the results were significant, this was a small study and we believe that a larger is warranted to confirm these promising results and also assess the drug’s impact on the disease itself,” says Horton. “We have some hope that this therapy may be able to slow the progression of IPF, but that would have to be tested in a larger study.” The study authors are: Maureen R. Horton, MD; Victoria Santopietro; Leena Mathew, BS; Karen M. Horton, MD; Albert J. Polito, MD; Mark C. Liu, MD; Sonye K. Danoff, MD and Noah Lechtzin, MD. -JHM- Note: Patients with idiopathic pulmonary fibrosis who participated in the study are willing to speak about their experience with the disease and how participation in the study affected their quality of life. “It will be good if we can get Drug Companies to become more involved – the digital stories sound a great idea. I would be happy to be involved with the stories.” “If we can learn from each other and/or professionals how to better manage our cough, it will be a big help.” “It was great to be able to meet other people in the same situation and talk about things. It was good to know we are not forgotten about and that research etc is being done and have things explained.” “Found the cough clinic session very helpful as met others with same problems. Also heard about different Potential treatments and ongoing trials would recommend anyone to come along and join in. It’s informal and friendly and will help in future with GP’s awareness, etc. Can sometimes along a partner or family member as they give support and sometimes know how hard it is to live with a ‘cougher’!” “Interesting to hear stories from other people. Found that symptoms varied greatly. Would like to meet again. Public should be made more aware of the condition ‘Reflux cough’. Travelling on the tube and the cough starts one feels like a ‘leper’ with all the dirty looks one gets.”
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