I am so proud of myself that I made the effort to attend the ILD meeting at my university hospital.
It is my goal this year to go to these meetings and continue to educate myself about my disease.
This month, it featured some of the faculty and fellows who attended the 2010 American Thoracic Society meeting to give us an update in ILD (Interstitial Lung Disease). They also spoke about specific ILDs. Dr. Chris Ryerson spoke about the latest research studies for Idiopathic Pulmonary Fibrosis (IPF), Dr. Eunice Kim spoke about the latest research on Connective Tissue-related ILD and finally Dr. Laura Koth whom I had met years ago spoke about Sarcoidosis and Hypersensitivity Pneumonitis (HP).
One fun fact was the results of the Viagra study that I had hoped to join. The study was for IPF only - not HP. Sad. That would have been fun. The results are in. The issue was to address pulmonary hypertension, which is very common in patients with IPF. The study was with 180 people with severe IPF whose DLCO were under 35 and it was for 12 weeks.
The Primary Endpoint was not positive. It was a short study and it seemed that Viagra did not help the hypertension. People with both IPF and pulmonary hypertension have a shorter life expectancy.
The Secondary Endpoints were more positive with a notation of and an improvement in shortness of breath, DLCO and saturation rates. Dr. Ryerson felt that there would probably be a bigger and longer trial in the near future.
Dr. Kim was probably the most interesting, as it was a totally new subject for me. It was about Connective Tissue diseases and ILD. These diseases include Rheumatoid Arthritis, Sjogrens Syndrome and Scleroderma. She works with Rheumatologists as so often these diseases also affect lungs in the form of an ILD. I had no idea. I have a lot of notes about the latest studies out of Japan and two university hospitals in the U.S. She also spoke about the interest in Vitamin D deficiency. The University of Cincinnati did a study of 93 ILD patients and found 54 had low levels of Vitamin D. There are also studies being done on the correlation between Vitamin D and some cancers, depression, PAD and autoimmune diseases.
Dr. Koth talked about the two granuloma diseases in ILD – Sarcoidosis and HP. In a biopsy, these diseases have little globs appear under a microscope. An environmental trigger causes HP and an antigen causes inflammation by kicking in the auto immune system. One must also have a genetic pre-disposition. Out of 100 people exposed to an antigen, only one or two will react. There is little to no research as it is hard to prove the antigen thus hard to gather a group together to be in a study.
HP only affects the lungs. Sarcoidosis affects a variety of the organs. Each patient can have a different issue. There is also a study in the south that is beginning to point to a link between TB and Sarcoidosis.
All in all, a very interesting few hours.
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