Tag Archives: doctors

I had never told anyone except my close family that I had an autoimmune disease. I hid it away like a dirty secret because I was afraid of appearing weak or being treated differently. Especially as a student of medicine—we are supposed to treat patients, not be them.

My name is Mary Lee Jackson and I was diagnosed with PV in April 2000.  I didn’t know anyone else with this disease and I felt alone, but at least I was being treated by a great doctor in Houston, TX – Dr. Robert Jordon.

I started coming to the IPPF’s patient conferences in 2003.  I have attended every year since, except for the 2009 meeting in Los Angeles due to surgery. People ask me why I keep coming back year after year, and the answer is simple: because I learn something new each year.

Where can I get the latest updates on PV and how it affects my body? The Patient Conference. And where can I find information on the medicines that are used to treat my illness, the side effects, and what I can do about them? The Patient Conference. And where am I be able to sit around and have a conversation about these issues with another patient? Or a table full of patients? Or a room full of them? Yep, the Patient Conference!

I go so I can live a full life. Some of the doctors that attend the meetings do valuable research on pemphigus and pemphigoid, so they are very knowledgeable on how the diseases affect me and everyone else. THAT makes me feel comfortable knowing they know what they are talking about. The presentations are informative and get better each year.

But even more than just listening to them, I get a chance to ask these world-renowned expert doctors my specific questions and get answers I may not be able to get elsewhere. And patients get to take this invaluable knowledge back to their doctors and share it.

And I do more than just take away information; I try to encourage other patients. I tell them the pain they’re going through now will get better, the lesions will go away, and you will regain control of your life. I