David Curren, patient advocate and board member for Breath of Hope Rhode Island, discusses his grandson’s diagnostic journey with idiopathic pulmonary hemosiderosis.
Idiopathic pulmonary hemosiderosis (IPH) is a rare disease characterized by repeated episodes of bleeding into the lungs, which can cause anemia and lung disease. The body is able to remove most of the blood from the lungs, but iron accumulation can lead to fibrosis in the lungs. Symptoms can resemble pneumonia and include coughing, coughing up blood, difficulty breathing, and wheezing. The cause of IPH is unknown.
As Mr. Curren explains, diagnosis of this disease can be difficult due to symptoms resembling those of other more common diseases. His grandson was in the ICU for two weeks before a lung biopsy was performed and an IPH diagnosis given.
Breath of Hope Rhode Island is currently raising funds for the University of North Carolina Children’s Research Center where a patient registry is being put together. The organization also focuses on raising awareness for IPH providing support for the community. For more information, visit https://breathofhoperi.org/.
To learn more about IPH and other rare lung conditions, visit https://checkrare.com/diseases/lung-diseases/