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After Being Diagnosed
Welcome to Holland
This piece was written by Emily Perl Kingsley, the author of the television movie, Kids Like These:
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this.....
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess come in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy."
"But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay."
"The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place."
"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met."
"It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts."
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that’s where I was supposed to go. That’s what I had planned. And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland.
Precautions for Chronic Granulomatous Disease Patients
Patients with CGD are especially at risk to acquire unusual fungal infections. The following list can help you eliminate unnecessary exposure to fungi.
REMEMBER — You cannot be too cautious with your health.
Additional Precautions
High Risk Groups Warned, “Don’t Eat Alfalfa Sprouts”
A recent California investigation of Salmonella and Escherichia coli O157:H7 outbreaks associated with raw alfalfa sprouts has prompted U.S. Food and Drug Administration (FDA) to reaffirm health advisories cautioning people at high risk for food-borne disease to avoid eating this food product.
High-risk groups include children, older adults, and people with compromised immune systems. FDA’s advisory, issued in August, 1998, reaffirms similar advice given by the national Centers for Disease Control and Prevention (CDC) the previous year.
FDA’s advisory is among a number of steps the federal government and sprout growers are taking to address safety concerns of alfalfa sprouts.
Raw sprouts have been recognized as a source of foodborne illness in the United States since 1995. In California, they have recently been associated with three Salmonella and E. coli O157:H7 outbreaks affecting about 60 people.
Sprouts lead beef in E. coli cases. According to CDC, alfalfa sprouts, rather than ground beef, have been found to cause the greatest number of E. coli O157:H7-related illnesses. The latest figures show that of the 285 reported cases of illness from the potentially dangerous bacterium, 108 were caused by alfalfa sprouts, while 20 came from eating tainted ground beef. Fifty-two cases of E. coli illness resulted from person-to-person contact, while wading pools accounted for 17.
An E. coli O157:H7 infection can cause hemolytic uremic syndrome, which can lead to kidney failure or death in children and equally serious complications in older adults. Salmonella can cause serious illness in children, older adults, and immune-compromised people. In healthy people, these bacteria can cause diarrhea, nausea, abdominal cramping, or fever for several days.
Consumers who have eaten raw sprouts and are experiencing severe diarrhea and other extreme symptoms of foodborne infections should see their health-care providers.
FDA’s advisory is an interim measure while the agency and industry look for long-term solutions to ensuring the safety of raw sprouts. In 1997, FDA and CDC charged the National Advisory Committee on Microbiological Criteria for Foods (a scientific panel that advises the government on food safety) with reviewing data on sprout-associated outbreaks and recommending preventive methods. FDA is now working with the U.S. Department of Agriculture’s Agricultural Research Service to identify possible interventions, including irradiation.
In addition, FDA has in place a nationwide field assignment to determine current sprout practices during plant growing, washing and packaging and is analyzing samples for microbes. FDA also is meeting with industry groups and the general public to discuss ways to ensure the safety of sprouts.
Reprinted from the FDA Consumer, November-December 1998
Pet Chews May Cause Illness in People
Based on a number of reports of human illnesses in Canada, the U.S. Food and Drug Administration (FDA) recently warned U.S. consumers about the potential risk from contact with dog chew products made from pork or beef.
According to the FDA, dog chew products, including pig ears, beef jerky treats, smoked hooves, and pig skins, may pose a risk of bacterial infection, such as Salmonella infantis. In normally healthy people, these infections can cause flu-like symptoms (nausea, vomiting, abdominal pain, and diarrhea, for example), but in those with weakened immune systems the infection can be more serious – even life-threatening.
The FDA is urging pet owners to wash their hands with hot water and soap after coming into contact with these pet chews. Elderly people, young children, and those with weakened immune systems should avoid contact with the treats altogether.
The FDA is working with other U.S. and Canadian health officials and has issued an import bulletin on products that have been directly linked to illnesses. Also, the agency is examining the manufacturing processes for products containing pig ears to determine how this product and similar ones can be made safely.
FDA Consumer, January - February 2000, page 7
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