Hi, My name is J. Dwain Perkins Jr.
I found out I had Behcet's Disease when I was 30.
I had a slight break for a little over a year from most of the symptoms. I even got off of chemo therapy and prednisone for almost two years, being held steady with dapsone and trental. Just recently however I had a relapse and had to go back on both the chemo and prednisone again.
My doctors feel that it was brought about from having reumatic fever as a child and from getting Camflobacter as a young adult. I am 40 now and I am starting to wonder if I am going to have to deal with this for the rest of my life. It is very hard on my wife and two children to see me go through it but they are extremely good to me. I have been married for 15 years and have been with my wife for over 20 years. She is my saving grace . Her and the Doctor that finally figured out what was wrong with me. (Dr. Mark Litchman) of Greenwich Ct. When he first met me I was down to 125 pounds and barely able to move.
Through persistence and many tests he narrowed it down and ultimately saved my life. We have become quite a team over the last 10 years.
My wife and I have two children, a daughter 13 and a son that is 10. We enjoy fishing, skiing, dancing and the martial arts. Unfortunately my skiing and martial arts are permanently on hold due to my condition.
My bone density is some what compromised due to the prednisone and joint pain I experience. Right now I am kind of holding my own, the ulcers are at a minimum but I fear that my eyes might be starting to have trouble. We have weathered much worse storms and I think we caught it soon enough this time to keep it in check.
All I can say for all of those of you that share this inconvenience is to hang in there and keep the faith. It could be worse, It could be your loved ones. A little secret I can share with you is to read up on Zen and zazen. Learn about your CHI powers and you would be amazed at how helpful they can be at dealing with the psychological end as well as the pain.
You probably think I am talking crazy here but trust me on this one. I am not a fan of pain medication so I had to learn alternative ways to deal. Of course if you were ever like I was even pain medication (and a lot of it) could barely dent the devastating pain this disease can inflict. True meditation can give at least a few minutes of reasonable relief.
I hope it works for you and I will try to get a picture to you as soon as possible. My heart and love go out to you all,