Like many of you, I also have VHL. I was diagnosed more than 23 years ago. Since then, I have had three brain surgeries (2 of which were on the brain stem), a cervical spinal cord surgery, many eye procedures, and an adrenal gland removed. Presently, I have 13 brain tumors, half a dozen throughout my spinal cord, and my pancreas and kidneys are covered with cysts. My yearly scans always showed some new activity -- new tumors, more cysts, and other times these things just grew.

After my last brain surgery, I experienced swelling in the back of my head. I was told after many tests that the swelling was spinal fluid that accumulated in the muscle and not in the brain, so I was not in danger – was told there was no need to worry, and it would be best that we let nature run its course. Four months later I still had this swelling, which was very uncomfortable, as many of you can attest to. At this time, I decided to see a doctor that dealt with nutrition and homeopathy. There was a health care practitioner in this office that I started to see routinely. I was immediately put on a detoxification program. It was a powder that I stirred into juice and drank 2 times a day. I started taking this powder during my 1994 trip to the VHL conference in Kansas City. I also did some visiting during this time. Ten days later I returned home without the fluid in the back of my head. I continued to see Perry, the health care practitioner, to see how else I might benefit from this therapy. I was in that office every six weeks for one year until one day Perry told me he was venturing out on his own. I then asked, " could I ask you a personal question?" He said, "Sure". I then inquired, "What kind of official training have you had to do this kind of work?" His response was "Officially none although I have attended various classes." My immediate thought was, "Well, I could do this."

In 1995, I started my quest, searching the field to see what was available. The opportunities were endless. After much research, I decided on a nutrition and fitness program. I found this information to be interesting and I wanted to learn more. After additional research, I chose a degree program in Natural Healing from the Clayton College of Natural Health. I was afraid to begin something not knowing if I would be able to finish. I did not know if I was going to survive much longer, never mind two years of studying. I weighed the pros and cons and the pros won. I then embarked on this journey in Natural Healing. There were many times that I wanted to drop out because of all the work involved, the endless projects and reports. I felt I had told too many people what I was doing to drop out gracefully -- including Joyce Graff -- so I continued. I graduated in 1997 with a Bachelor of Science degree in Natural Healing focusing on herbs. I practiced what I was learning with diligence. I lost 45 pounds, spasms decreased or diminished altogether, numbness went away, and a lot of the pain I experienced subsided. My tumors even seemed to cooperate. I felt so much better. At this point I started reading whatever I could get my hands on pertaining to natural healing. I was busy making tinctures, ointments, salves, and a lot of other things. The more I delved into natural healing, the more I wanted to learn. I did some more investigating and found a program in anatomy and physiology. I am always interested in learning more about the human body.

This is where I am today. I still continue to practice what I preach and I look at life and what it has to offer in a way. My life is so different now; death no longer feels like one surgery away. I cannot even begin to tell you how I feel today compared to how life was 6½ years ago. Today I feel empowered. Back then I was averaging a surgery every 1.89 years. My last surgery was 6 years ago. What I am about to share with you is strictly my own observation and opinion. It does not necessarily reflect the opinion of the Family Alliance.

Our care should be two-fold; prevention -- prevent any additional surgeries -- and improvement -- improve our present condition. The magic pill that we are all waiting for has not yet been developed. Therefore, it is up to us to take control of our health. You may say to yourself, I can’t do this I don’t know where to begin. My response is Yes, you can do this and it all begins with what you have been hearing for years—eat plenty of fruits and vegetables and exercise on a regular basis. But let me explain why these things are important to your well-being. The body is remarkable. If given the right nutrients the body tries to restore homeostasis, a state of natural balance among all the organs. The body has a difficult time with items that cannot be digested. My philosophy is my body has a difficult time to begin with, so why feed it things that it cannot use? This energy is better utilized by my body’s normal functions in trying to restore health. Would you put oil in your gas tank? Of course not! So why would you put a substance into your body that it cannot use? Many of you probably only put high-octane gas in your car. Why do we sometimes treat material things better than we do our own body? I feel that I am not a fanatic, but there are certain rules that I do live by and I would like to share them with you.

Eat simple, healthy meals
Eat plenty of fruits and vegetables
Exercise regularly
Eat butter rather than margarine
Eat plenty of onions and garlic
Drink at least 6-8 8oz glasses of water a day. Know your water. It may be necessary to purchase bottled water
If you eat pork, do so in small quantities
Do not smoke
Limit alcoholic beverages
Avoid unnecessary drugs
Avoid processed foods as much as possible
Avoid nitrates and sulfites. These are usually found in processed meats like ham, hot dogs, corned beef, and bologna
Avoid products with monosodium glutamate (MSG). This can be found in many processed foods likes salad dressing, soup, even barbecue potato chips, and Chinese food. Although, in many Chinese restaurants you can request no MSG, this will only eliminate it from the main dish. If they cook with MSG, it will still be in the egg rolls and soup.
Limit caffeine intake
Avoid fast food

Stay away from artificial colors, flavors, as well as dye colors
Avoid foods that have been burned

Limit fried foods
Read labels. Stay away from chemicals. If you can’t pronounce it, don’t eat it!

As many of you know, our tumors are formed by the abnormal growth of blood vessels. I have worked with various people with VHL. All of them, 100%, including myself, have problems with one or more of breathing, circulation, or blood pressure (high or low). Oxygen plays a major role in each one of these. Page 29 of the VHL Handbook states: "New research also shows that the VHL gene plays a role in a signaling system which tells the cell how much oxygen is available to it. When the VHL protein is missing, the cell believes—even if it isn’t true—that it is starving for oxygen. So it puts out distress signals to the body, Help! I need more oxygen! The body responds by building more blood vessels to bring more blood to bring more oxygen."

Whether the body is starving for oxygen or not I feel it is necessary to do some form of cardiovascular training. In my opinion one of my biggest accomplishments was to become aerobically conditioned. I have had trouble breathing since I was about 12 years old from childhood asthma. I no longer have asthma, but I still find it difficult to catch my breath. I do much better since I do some form of cardiovascular conditioning consistently. As long as I do it regularly, I am able to take that deep breath that my body desperately wants. Some cardiovascular exercises include a stationary bicycle, treadmill, and walking at a brisk pace. Start out very slowly and increase your activity appropriately.

Another problem I have noticed in a number of people with VHL, is an improper elimination cycle. Elimination is extremely important in maintaining health. This process eliminates dead cells, bacteria, and toxins. If these toxins are not disposed of, they will accumalate in the body. If they stay there, where do you think they might go? To the weakest link. This usually means to an area where we are already having problems. Therefore it is important that this process work efficiently. Maybe you just need to add more water to your diet or look at the food-combining method. Exercise will also stimulate this action.

What can I do to feel better? No one knows you better than yourself. Identify your problems: is it stress, are you in a lot of pain, or do you have trouble walking, or are you possibly depressed. For any problem first ask yourself, Why do I think this is happening? Do I have control over the situation? If yes, begin here, If no, ask why not. Then ask, Can I work around this problem? Whatever the problem is, there are many things one can do to feel better —from massage to macrobiotics, from meditation to herbology from ayurveda to guided imagery. We have this illness to deal with, we will never be like we once were, but there is always room for improvement no matter what our condition is. I have compiled a list of natural therapies (see below).. There are 48 complimentary therapies on this list and many are useful. The information includes a synopsis of the therapy, as well as a reference if you want to learn more about any one of them. For example, if you have trouble digesting food, look at nutrition with the food-combining method. If you suffer from stress and tension, perhaps you may want to look into exercise and music therapy, or even the Alexandria Technique. If pain is a problem, look into guided imagery. It also depends how and why you are having this pain, perhaps it is because of the stress you are under. In that case there are many things you can do to relax, you may even include some chamomile herbal tea to help reduce tension.

I believe there is no single therapy, medical or complementary or otherwise, that will solve all of our problems. But a combination of many is extremely helpful.