Idiopathic pulmonary fibrosis (IPF) is a disease whose cause and cure are not studied and there is also no known treatment for it till date. It is a lung disease characterized by scarring in the lungs causing fibrosis and slow deterioration of the entire organ (lung).
Statistics show that approximately 83,000 Americans suffer from the disease and 31000 new cases are diagnosed every year. Ten years ago Jean Thompson became a prey to the disease and now her twin sister joy Thompson is suffering from this incurable lung disease. It is a very sad situation that till date there is no accepted treatment. New research is done by patient-centered non-profit organization called the Coalition for Pulmonary Fibrosis (CPF). This has done a lot to help patients suffering from IPF. Mark Shreve, CEO of the CPF said that when it affected the twin sisters they have not heard of the disease. This is because there were no resources available to conduct clinical trials for disease.
When Jean was suffering from the disease there was no correct diagnosis which brought her to the last stage of the disease. Hence CPF helped patients educate themselves about the disease. CPF was formed by a group of physicians, patients, family members and non-profit organizations who saw a huge unmet need. It has set various options of treatment for those suffering from IPF such as lung transplantation and pulmonary rehabilitation. CPF has added a network of 35 support groups and important patient access to physician referrals.
In 1999 the American Thoracic Society released a consensus statement regarding the diagnosis and treatment of the disease. It is thought that genetics may play a role in the causes of IPF for some patients. But the genetic link has not been pinpointed. several investigational therapies are in the pipeline such as interferon gamma 1-b, pirfenidone, imatinib mesylate, etanerrcept, and iloprost-listed alpha that may hold the key to life-saving treatments for the disease.