Hi, everyone!  You may already be aware that there is a study underway right now to try to discover what may be causing FFA.  This study is gathering information only.  There are no drug trials involved. 

Dr. Osen at Duke is leading this study, but there are 9 collection sites around the country.  In order to participate you must first be seen by one of the study doctors at one of these sites. More details are available on the CARF website, including who to contact at each site.  Here is a link for more information: http://www.carfintl.org/trials-studies.php

I am participating in this study.  When I saw Dr. Olsen on Monday, I had already sent her my biopsy results and diagnosis.  She examined my scalp, took pictures and measurements, and then provided me with a study number along with additional information and instructions for accessing the online survey. 

I completed the online survey this afternoon.  It took about an hour, and it was quite extensive.  I was prepared with much of the information before I logged on because Dr. Olsen had told me some of the things that would be asked.  For instance, the zip codes for every city I’d ever lived in and the years when I lived in each place.  The questions for each location were things like: well water or city water, insecticides used (like mosquito bombing they used to do many years ago), was it within a mile of a cell phone tower or nuclear power plant, etc.  Also, the different kinds of occupations I’ve had and whether or not I was exposed to chemicals while working, pets and kinds of pesticides used on them, what face and hair products I was using when I noticed the hair loss (and what I’m using now), medicines and supplements I was using at the time I noticed the hair loss (and what I’m using now), and also a series of questions about certain vaccinations, medications, birth control pills, cosmetic procedures, dental procedures, cell phone use, etc. in the past. There is an option for “Unknown” if you just don’t know.  Plus, there’s a comment box at the end to add anything else you think may be relevant to share. 

If you live near one of the collection sites, I hope you'll consider participating in the study. I feel like it’s a pretty comprehensive survey and I’m glad I took the time to fill it out.  I just hope lots of other women do the same so that we can figure out what is causing this disease.  Thanks for considering!