Why I Am Creating This Blog

If you are reading this site, most likely you have recently been diagnosed with Peyronie’s and are looking for more information or you have had it for awhile and want to see if there are any new treatments.

I have had Peyronie’s since 2006 and have done some research. It is a fibrotic (scar tissue) disorder and probably related to a number of other medical conditions. There is also a positive correlation with prostate cancer surgery. Johns Hopkins Brady Urological Center is interested in interviewing patients who have developed Peyronie’s after a radical prostatectomy. http://urology.jhu.edu/newsletter/prostate_cancer517.php Ultimately, Peyronie's is still a medical mystery. The cause is unknown and there are no satisfactory treatments. The most
accurate, but discouraging information is on a blog, http://thebentnail.blogspot.com/. We owe a debt of thanks to the physician who created this site.

What does the future hold for sufferers of this disease? Apparently not much! There is a website listing government clinical research trials. When you enter Peyronie’s, nothing comes up. There is some private research, but much of it concludes that physicians would do best by lowering patient expectations. The Combined Federal Campaign Handbook lists hundreds of federally approved charities. You can contribute to Cats R Us or The International Potato Center. Nothing for Peyronie's.

There are a number of Peyronie’s online forums and the basic theme is to wait and hope for someone else to take action. I don't get the passivity. This condition screws up our lives, big time. It's expensive. I have personally spent a few thousand dollars just in travel and lodging going back and forth to a medical center for Verapramil treatments. It seems as if we are looking to the sky for some miracle.

THE PURPOSE OF THIS WEB SITE IS SIMPLE. WE MUST TAKE ACTION TO HELP OURSELVES.

Here are some ideas - I am sure readers have even better ones:

I would like to start a foundation for our condition. Is there a lawyer or paralegal who is willing to help?

I have contacted a number of lobbyists who deal with medical research and found one that seems pretty good. His minimum annual fee for lobbying Congress for Peyronie’s research via the National Institutes of Health (NIH) is $25,000. Will you contribute?

I read a number of Men's magazines and have never seen an article about Peyronie’s. Is anyone willing to contact them and suggest that they write an article about our condition?

As you can see, I am not very good at designing a web site. If you can design a web page, contact me.

Your condition is not going to heal itself. Are you willing to do something to help yourself?

Please contact me so we can begin to take the necessary action to find a cure.