Yearly Archives: 1999

This is not a scientific study, but we can draw some conclusions that would tend to support the current statistics especially for PV. The one big difference would be the correlation between males and females. We had females returning surveys twice as much as males – 32% males, 68% females for PV. This fact may be due to many factors as the prevailing statistics state that this disease is equal 50/50 between men and women. From the people who have contacted the Foundation throughout the 4.5 years we have been in existence, we calculate that the statistic would be more like 60/40 female to male.

Since Prednisone can cause water retention and puffiness, we need to keep our sodium chloride levels down, but not totally eliminated. Most people have been conditioned to a salty taste by nutrient-poor refined carbohydrates commonly known as snack foods. Sodium occurs naturally in foods and it is not necessary to add sodium chloride to foods to be healthy; quite the contrary.

What it does: Sodium and potassium need to be in balance so that nutrient and waste exchange can take place across cell membranes. Sodium is also necessary for the production of hydrochloric acid, the digestive enzyme secreted by the stomach to digest protein. It is required for the proper functioning of our nerves and the contraction of our muscles. It is also required for fluid balance, electrolyte balance and pH balance.

Too little sodium can cause impaired carbohydrate digestion, and possibly neuralgia. Dietary Allowance: Normal blood levels of sodium are 137-144. The estimated RDA for healthy adults is 500 mg. Some experts say you need 2000 mgs per day if under stress. Over 14 grams is toxic. One teaspoon is 2000 mgs, 1/8 teaspoon is 250 mgs.

Types of Sodium: Naturally occurring sodium in foods is desirable; table salt is not. Refined table salt is stripped of all its minerals except sodium and chloride. It is heated to high temperatures, bleached, treated with anticaking agents such as the toxic alumino-silicate. This prevents dissolution in the fluids in our system. The aluminum leaves a bitter taste so the manufacturers add dextrose, a refined sugar, which disrupts the body’s equilibrium.

Natural Sources: shellfish, carrots, beets, artichokes, kelp, and natural cheeses. Unrefined sea salt, or a rock salt called Real Salt. Both these salts contain naturally occurring iodine. Potassium, magnesium, and calcium counteract the effects of excess sodium.

Dangers of too much sodium: Too much sodium can cause a depletion of potassium, and often high blood pressure (hypertension), which can lead to stroke and heart failure. Excess sodium causes calcium to be lost through the urine, and can contribute to osteoporosis. The resulting fluid retention can also stress the heart and circulatory system. Bloating (edema) often causes irritability and depression. Headaches and migraines can be caused by eating substances with sodium such as MSG (which by the way, has excitotoxins which can damage and kill nerve cells), sodium sulfites, nitrates (usually found in luncheon meats), and nitrites. Salt has long been indicated as a cancer threat to the stomach, especially in collusion with other carcinogens, such as residues and smoke from barbecuing and grilling meat. Salt is an irritant to the stomach that can induce gastritis, increases precancerous cell replication and boosts the potency of chemical carcinogens causing stomach cancer, and ulcers. The American Heart Association reports that blacks have a greater sensitivity to salt and a higher rate of hypertension.

Foods with high sodium: luncheon meats, hot dogs, cured meats (such as ham, bacon, corned beef), ketchup, chili sauce, soy sauce, mustard, baking powder and baking soda. Ninety percent of the sodium Americans consume comes from processed foods. Just read the labels you’ll be shocked at the percentage of sodium. Sodium added because there is no flavor in the food to begin with and salt makes it edible.

Factors affecting need for sodium: Older people, overweight people, and people who have kidney damage are more sensitive to salt intake. Those that exercise a lot, live in high elevations, have vomiting or diarrhea and vegetarians (because of excess potassium) need more sodium. Check with your doctor. Exhaustion makes you want more salt to stimulate your metabolism, but it won’t help. Symptoms of low sodium levels: People under prolonged stress can have low sodium levels because of weakened adrenal glands. Symptoms are allergies, chronic fatigue, flatulence, low blood pressure, cold hands and feet.

If you crave salt it can be sign your adrenal glands are depleted due to stress. Snacks without much sodium: celery spread with unsalted nut butter, sliced jicama (marinate in lemon juice, later add chili powder, red pepper), veggies dipped in a yogurt and dill weed sauce, whole grain pretzels without salt, air popped popcorn with herbs (or cayenne, or chili, and canola oil) unsalted baked Tostitdos with low-salt salsa (tomatoes, scallions, chiles or jalapeno, red wine vinegar) tortilla chips dipped in warm refried beans, unsalted nuts or unsalted dry roasted nuts, low sodium bottled water (Evian) or seltzer, low sodium V8 or tomato juice with hot sauce.

Cooking: If you add salt after cooking, it will taste stronger and you can use less. Cutting down on sugar and alcohol can minimize salt cravings. Use lemon , mustard greens, or radishes for flavor. High sodium vegetables such as celery, carrots, parsley, chard, spinach, and kale can impart a salty flavor to cooked foods. Use fresh (under 6 months old) ground herbs and spices to jazz up foods. Fresh herbs can be frozen. Mrs. Dash (available in the spice section of your grocery) has a selection of salt-free seasonings, some are without garlic and onions for those who are sensitive. Herbed olive oil, or herbed vinegar (Spectrum Naturals have no added sulfites). Taste before you salt your food.

Your individual situation may require special considerations. Reasonable people will consult with their physician before making changes to their medical regimen.

Cold, refreshing and nutritious, smoothies are a great way to soothe a sore throat or just enjoy a warm summer day.

All you need is a blender and an imagination (We sparked our imagination by visiting our local smoothie shops and studying the combos on their menus). Enjoy!

Oh, and check with your nutritionist about your individual requirements. Bananas, for example, have potassium for those on Prednisone, but they are also high in calories too.  

Fruit Smoothie:

  • 1 frozen banana (best if cut into one-inch chunks, then frozen)
  • 1-3 ice cubes
  • 1/2 – 1 cup of fruit
  • 1/4 to 1/2 cup of nonfat yogurt or ice milk. (*For an extra-nutritious smoothie, use 1/4 to 1/2 cup of orange juice or soy milk instead)
  • Add ingredients in a blender and blend until smooth. It’s that easy.

Try these suggestions or make up your own variations:

One cup of any of these easy-to-find fruits: strawberries (hulled), peaches (fresh or canned), apple slices (or juice).

Not-so-easy to find, but worth the effort, are these exotic combos:

  • Tangerine and mango nectars
  • Mango, papaya, honeydew and cantaloupe
  • Peach yogurt with pineapple, orange and banana juice (avail- able premixed in juice section of your local market)
  • Kiwi, strawberries and pineapple juice
  • Apricots, mango and lemonade
  • Papaya, raspberries and any juice

Feeling festive or daring? Add cinnamon and/or nutmeg, cloves, ginger or vanilla. Protein powder and wheat-germ work also.

Don’t forget your veggies! If you have a juicer try this one: Juice from 5 or 6 carrots (2 cups) 1 1/2 to 2 cups of yogurt (plain, vanilla or flavored) 1 banana, fresh or frozen Several mint leaves.

Hot smoothies?! Those having trouble eating regular food can use a blender to make eating any food easier.

By Sergei A. Grando, MD, PhD, DSci
Professor of Dermatology
University of California Davis

The Need for Alternative Therapies for Pemphigus. In autoimmune pemphigus, systemic glucocorticosteroid treatment is life saving but may cause severe side effects. Pemphigus patients therefore need drugs that will provide safer treatment of their disease by replacing systemic use of glucocorticoid hormones such as Prednisone. Development of non-hormonal treatment is hampered by a lack of clear understanding of the mechanisms leading to pemphigus lesions. Pemphigus can be associated with myasthenia gravis, and in both diseases the autoantibodies to acetylcholine receptors are produced, suggesting a common mechanism of disease development.

by Luis A. Diaz, M.D.
Professor and Chairman Department of Dermatology Medical College of Wisconsin
Milwaukee, Wisconsin

Pemphigus foliaceous (PF) one of the major clinical variants of pemphigus, is characterized by superficial blisters and anti-epidermal autoantibodies. The epidermal antigen with which PF autoantibodies react is a desmosomal protein designated desmoglein 1 (dsg1). There are two forms of PF-a sporadic form which has worldwide distribution, and an endemic form, which has only been observed in certain rural areas of Brazil, Columbia and Tunisia.

By Edward Tenner M.D.
Hoffman Estates, Il.

Each type of pemphigus and relate diseases has differing kinds and differing percentages of ocular involvement. Also, the treatments for these diseases have many ocular side effects. Therefore it is very important that an Ophthalmologist examines the eyes of patients with pemphigus . This is especially true at the beginning of symptoms and treatments so any eye problem can be promptly handled.

By Dominik Ettlin, M.D., D.M.D.
Northwestern University Dental School
Chicago, Illinois

As most readers know, the National Pemphigus Foundation held its first annual meeting in Chicago on August 1, 1998. Attendees of the meeting were given a questionnaire. The purpose of this survey was to shed light on the diagnostic process of each participant, and to analyze the collected data for possible trends. The questionnaire was also posted on the Foundation's website for a few weeks. The collaboration between patients and clinicians is critical to gain more insight into the clinical and basic research aspects of the disease. I would like to take this opportunity to thank everyone who took the time to answer the questionnaire!

By Sergei A. Grando, M.D., Ph.D., D.Sci.
Professor of Dermatology
University of California Davis
NPF Advisory Board Member

The goal of my research is to develop a safer and more rational treatment for pemphigus. I am deeply concerned that we, as physicians caring for patients with pemphigus, have to accept the risk of severe side effects related to the use of long term, high dose corticosteroid therapy.

Despite recent progress in developing nonhormonal therapy for other autoimmune conditions, the treatment of pemphigus remains largely dependent on corticosteroid hormones. The lack of progress in developing new therapies for pemphigus is ironic because we thought we understood the basic mechanisms responsible for the development of this disease. But, perhaps our understanding was wrong and possibly this misunderstanding has hampered advancement in treatment.