Advocacy and Awareness

In the more than 250 years since Francois Gigot de la Peyronie was the first to report a clinical series on penile curvature, thus having the disease bear his name, the etiology of the disorder still remains obscure. Since the initial description of the disease precious little progress has been made in discovering its cause, consistently successful treatment options, or the actual incidence of the disease. The question then is why? 

Why is Peyronies Disease, sometimes called Induratio Penis Plastica (IPP), all but unknown to those who don’t suffer with the disease? Why have there been no real advances in treatments? Why is there so little research with the disease? Why do so many urologists treat the disease as an irritant rather than understanding the true devastating nature of PD? 

The simple answer is that the disease has been considered so rare and non-life threatening that it has generated little interest in the medical or pharmaceutical communities. The National Institute of Health classifies Peyronie’s Disease as an orphan (rare) disease affecting less than 200,000 of the population. However, when the facts are examined it becomes clear that this is not a simple matter with a simple answer. Let us take a look at some of the facts concerning this issue. 

Peyronie’s Disease and Erectile Dysfunction are often looked at as similar in nature. However, ED is really a one dimensional condition that is well known and well understood. Every man who is sexually active has experienced ED from temporary psychological situations, and other men, for medical reasons have chronic or permanent ED. PD on the other hand is a multidimensional disease that may include some degree of ED along with pain, loss of length, loss of girth, and deformity from bending and twisting making intercourse difficult or impossible.  

ED certainly can be a serious problem, but in many cases it can be successfully treated. It is well known and well understood, and has been widely discussed for many years. PD on the other hand attacks the very core of the patient’s manhood through deformity and even gross disfigurement. It imparts pain, both physical and mental, and it disfigures not only the erect penis but the flaccid penis as well. It robs a man of his manhood and he suffers in silence with a little known disease that is impossible to cure, has little in the way of treatment, and which many urologists treat as an irritant. The ED patient may very well discuss his condition, but it is the rare PD patient that will discuss his condition, and that fact alone is the answer to so many of the questions. 

We know the incidence of the disease is far greater than 200,000 cases. In one well known autopsy study of 100 men with no known Peyronie’s disease, 22 had fibrotic lesions of the tunica albuginea. Now that is probably on the high side, but 10% over a man’s lifetime is a reasonable estimate. However, if the patient will not discuss his disease, and in many cases not even seek medical help, the true numbers remain concealed. If the PD patient will not discuss his disease how will the population in general ever learn that PD is a hideous disease that destroys marriages, families, and even lives? If the PD patient remains silent how will the pharmaceutical companies know the real potential for return on investment of the research dollars? Can we really blame our urologists for taking the disease so lightly when we don’t confide in them our real mental and physical suffering? When we don’t tell them how our lives are being destroyed by this horrible disease. As Pogo said many years ago, “I have seen the enemy… and it is me!” 

Gentlemen, our ladies are much better at this than we are, they stand up and fight, we hide in the closet. What they have accomplished with breast cancer awareness is simply outstanding. If we are going to advance the understanding of, and treatments for this disease, we must do the same. We must become advocates and we must promote awareness, and we must start quickly. Effective treatments can be developed to improve the condition, but that won’t happen until PD patients unite and become vocal. 

With that in mind the purpose of this area of the web site is to promote openness and advocacy, and to serve as an organizational tool to coordinate advocacy efforts. I see many new forum members who want to be active in the forum operation. Some have even expressed the willingness to be open with their disease. We have a category called Peyronie’s Advocacy Group. Think about what can be done to advance awareness, and post your ideas and thoughts there. You may seek help to organize an awareness campaign of some sort such as writing letters to officials, seeking an open discussion on a talk show, and so forth. Post your thoughts and let’s discuss whatever ideas you may have.  

Let me say here that I know a lot of you do not want to be open with your condition. There are many understandable reasons for this. For those folks there is much that can be done behind the scenes. However, to make real progress we will still need a good percentage of patients and partners that will be willing to stand up and discuss their disease.  

Having a good PD support forum is a wonderful thing for all of us. However, as good as it is, it does not advance our cause outside of our own group. We cannot develop new drugs, we cannot develop new treatments, and we cannot do meaningful research. What we can do is promote awareness and understanding of Peyronie’s Disease, as this is the key to jump start research into better drugs and better treatments. This is the area where we can all make a difference. It’s time to act!

Larry Holcombe
Director, Peyronie’s Advocacy Group
Peyronies Disease Society