This week I have had a confirmed diagnosis of retroperitoneal fibrosis. I had a CT scan then a biopsy the next day. I received the official results and began on a course of prednisone. I read your article on RPF and found it informative, if not a little scary. I
have also been busy reading other information about the disease. I was interested to see that it more commonly affects men and many of them are older. I turned 43 in March. Is there a register of those with this disorder in New Zealand. - AN
I'm not aware of a registry, but I am going to pass along your contact information, as requested, to the writer with retroperitoneal fibrosis from a few weeks ago.
It will be great for her to know she's not alone. It's bad enough having a poorly understood disease and worse when you think you're the only one in the world with it. The idea that the two of you could serve as resources for each other makes this column worthwhile for me.
I'm printing your letter this week as a reminder to those with any troubling illness - not just a rare one - to use the media to your advantage. Find a group, a blog, an internet site, and take an active role in understanding more about your disease and how to manage it.
Make sure you have a doctor you trust who can advise you. If you don't have a doctor you can freely communicate with and whose opinion you value and trust, don't be reticent - broach the topic with them. If communication problems persist find another doctor with whom you feel comfortable.
The internet has more than its fair share of misinformation and opportunism. Beware. But occasionally it can deliver camaraderie, wisdom, and peace of mind.
