My name is David Rodgerson, I am 23 years old, and this is a brief introduction to my XLP story. For more information on XLP (also known as x-linked lymphoproliferative disease/disorder or Duncan 's disease), visit the new web site that my sister and I have had made.
In August of 2001 I discovered that I have a condition called XLP (X-Linked Lymphoproliferative Disease, or Duncan 's disease). The disease is a genetic one and runs in my family. As well as myself, it was discovered that my nephew Aaron has it as well, as did my brother Glenn, who had passed away in 1988 from mononucleosis (an effect of having XLP ). After extensive testing of my immediate and extended family, it was disovered that the only other carriers were my sister Cindy and my mother Barbara.
In April 2002, I had a stem cell transplant to "cure" me of this condition. While this does not fix the underlying genetics of the rest of my body, it has replaced my immune system with a new healthy one and thus removed the three problems caused by XLP . Since then I have had a little trouble with graft vs host disease (a complication often caused by transplants), but have otherwise been recovering wonderfully.
As it is an extremely rare condition, I have been looking for other people in the world who might share this condition and wish to talk with me. I'm looking for stories, information, or even just someone to say "I have this too."
With some help, my sister and I have completed a resources page for XLP , where people with this condition can do research to find out about the latest information on the disorder, and read other people's stories (with the people's permission to have them posted of course). The web site is intended as a resource but more importantly as a source of hope.
As for now, I'd like to hear from anyone interested in talking. You can reach me at the e-mail address below, or visit my personal web site.
Web site - http://www.xlp.ca/
Footnote: Unfortunately David subsequent to writing this story died of Graft vs. Host Disease. He was an inspiration to many and is sadly missed.