Neurofibromatosis, an uncommon name for a somewhat common illness
DEAR DRS. DONOHUE AND ROACH: My daughter was diagnosed with a disease called neurofibromatosis. She has three daughters. One has it, and so does her 3-year-old granddaughter. Her other two girls are OK. None of the doctors has told us anything about this disease. Can you shed some light on it for us? -- M.K.
ANSWER: Neurofibromatosis, a name unrecognized by most, is not a rare disease. It appears in about one in every 3,000 births. It's a gene-caused illness. In half of the cases, the gene is inherited from one of the parents. In the other half, the gene arises from a mutation in one of the fetus's genes.
Neurofibromas are benign tumors of nerves and nerve coverings. They sprout from the skin as soft, rubbery growths, or they might develop deeply under the skin. The number of neurofibromas ranges from a few to so many that they are disfiguring.
In early infancy, a child with the neurofibromatosis gene develops tan, flat patches that are the color of coffee to which milk has been added. The official name of these patches is "cafe-au-lait spots," French for "coffee with milk." Their size varies. Having six of those spots is evidence of neurofibromatosis.
When neurofibromas are few, people are not greatly affected by the condition. However, people whose bodies are covered with them are greatly affected. Neurofibromas deep within the body can interfere with body function and can impinge on nearby organs.
Late childhood and early adolescence is the time that these growths appear. They increase in number as the child ages. Neurofibromas on the skin can be removed if their number isn't huge. Deeper neurofibromas are more difficult to treat. Bones are another target of this illness. Curvature of the spine sometimes is a consequence. I have described neurofibromatosis type 1, the more common variety.
Contact the Children's Tumor Foundation, formerly called the National Neurofibromatosis Foundation. It stands ready to help you understand this illness in depth. Its website is www.ctf.org, and its toll-free number is 800-323-7938.
DEAR DRS. DONOHUE AND ROACH: I read a recent article that said drinking one can of diet soda a day increases the chances of a stroke or heart attack by 67 percent. Is it the artificial sweetener in the soda? Is it some other ingredient? -- G.K.
ANSWER: It seems like that warning has been published in every newspaper and magazine in North America. The investigators haven't identified the exact cause of the increased incidence of strokes and heart attacks. It can't be the artificial sweeteners, since those sweeteners are used by others in many different ways than soft drinks. The warning also applies to regular soft drinks with sugar in them. A proposed explanation for the increased incidence with sugared soft drinks is the resulting obesity.
I don't know what to make of this information. I want to see more evidence from other researchers. It's funny that this information is only now coming to light when we've been drinking these products for so many years.
DEAR DRS. DONOHUE AND ROACH: My problem is trying to put on weight. I have been thin all my life. I carried mail for 27 years. I have now lost weight, which I can ill afford. How do I gain it back? -- R.M.
ANSWER: You hinted in another part of your letter that you had a health problem, but didn't mention what it was. Does your doctor think it's the cause of your weight loss?
If your health is good, the only way to gain weight is by eating high-calorie foods. You have to take in more calories than you expend. Two tablespoons of peanut butter has 200 calories. If you make a snack of a peanut butter sandwich with two slices of bread at 100 calories each, you'll eat 400 calories more a day. A banana has 105 to 170 calories. If you eat both the sandwich and the banana, you're over 500 extra calories. You should put on a pound more a week doing this. Or you can use a supplement like Ensure or Boost. You'll find them in all drugstores. Take them in addition to your meals, not as a substitute for meals.
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Drs. Donohue and Roach regret that they are unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may write the doctors or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Readers also may order health newsletters from www.rbmamall.com.
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