Pemphigus can only be cured by spending millions of dollars, having a national spokesperson, and national attention.
False. I am doing quite well with only a food budget.
Only somebody with Pemphigus can understand me, I am alone.
False. I have noticed this phenomenon among people living with serious illness. They think that the only ones who can understand them are people who have experienced the same problem.
Many of you have called me, and I sense that your biggest need is for somebody to talk to. This probably derives from the fact that all you have available to you are your family and friends. As they are not skilled listeners, and are distracted by their own problems (which they consider much more important than yours) they are unable to be a source of ongoing support to you. Similarly, your doctor cannot support you because he/she has only 10-15 minutes in which to see you, diagnose and treat you, and also has a personal life that is filled with distresses.
I have an active support system of people who have never heard of Pemphigus. They have issues that are as important to them as Pemphigus is to me. The price of their support is that I try to support them. This is much easier than it may sound, and I have found it to be empowering and healing for me to help other people heal. The process is called Re-evaluation Counseling, or Peer counseling, and is available in most communities. The man requirement to be a counselor is your willingness to listen to somebody. If somebody listens to me, I can fix myself. I am not alone. If you contact me, I can put you in touch with the Re-evaluation coordinator in your area.
Pemphigus is purely genetic.
False. It is my conviction, after studying many texts on the subject, that heredity is not the primary cause of Pemphigus. Heredity hints or points to the location of the weak link in my body, suggesting which part or system is likely to first show pathological evidence of deterioration from the stress of long continued dietary improprieties and environmental pollution.
There is no doubt that there are many illnesses which are purely genetic or the result of environmentally caused genetic damage, but I sincerely doubt that Pemphigus is one of them, and it is my opinion that money spent on genetic research as a way to prevent Pemphigus is wasted. Even if a gene is identified and fixed, the person will develop a different condition when exposed to stress.
Pemphigus is special because it is so hard to diagnose.
False. My experience has shown that virtually all serious auto-immune conditions are difficult to diagnose. It often takes over one year to diagnose an auto-immune condition. While I wish it were possible to educate doctors about Pemphigus, we have to remember that they have several thousand other conditions to think about as well. It is a question of priorities, and more common diseases take precedence. Think about your own life: things that happen daily get more of your attention and resources, while events that happen rarely get much less attention. As much as we deny it, doctors are human too.
Prior to Pemphigus, I was in perfect health!
Were you? You never had a cavity, a headache, diarrhea? You never took an antacid, got an immunization or had the flu? Is your eyesight 20/20 or better? Did you have acne? Did you ever take an aspirin?
Now wait a minute, those are things that happen to everybody, and of course some of them happened to me. They are warning signs. Cavities are signs of a depressed immune system and organ stress. Poor eyesight is a result of malnutrition. Acne is the bodies attempt to remove toxins. Headaches are often caused by intestinal irritation.
The drugs we take to suppress the symptoms of these conditions do not heal the conditions. They continue on, and, despite our bodies best attempt to maintain itself, we get overwhelmed. It is the familiar parable of the "Straw that broke the camel's back." No one illness or symptom was enough to get your attention, and eventually we gave out.
Please pay attention to me!
Everybody likes attention, we need it, we cant live without it. I've noticed a trend among people living with chronic ailments of all kinds:
"If we can just get people to pay attention to us, throw money at us and research our problem we will be cured!"
Lets do a reality check.
First, when was the last time you paid attention to the homeless person on the street, a lost animal, or a family that lost their home to fire? You are pretty much self centered around what is important to you, and quite frankly, so is everybody else.
Second, we've been throwing billions of dollars at heart disease, cancer, diabetes, muscular dystrophy, headaches and a multitude of other conditions. Although headlines might deceive you, we are truthfully no closer to curing these ailments than we were 50 years ago. We are a lot better at controlling them or temporarily removing the symptoms, but not curing them or preventing them from occurring.
It is up to each of us to help ourselves.