Spring Summit
Our annual spring summit is scheduled for May 30, 2001 at 5:30
p.m. at Providence Hospital and Medical Centers Fisher Auditorium.
The staff of the clinic is very excited to host this 2nd annual
event to allow all of our friends and patients to learn about new
research, visit with our favorite vendors and meet with each other.
This forum will be a great opportunity to meet with the representatives
from Abi Vest to learn about the program being offered to Providence
Patients. Please bring all of your vest questions with you when
you come.
Patients and families will also be able to meet with representatives
from Scandipharm, Pathogenesis, Several home-care agencies, Your
clinic staff, respiratory therapists, just to name a few.
High Fiber Products Available
Many of our patients require diets that are high in fiber to eliminate
and prevent many GI complications. To help you meet these high-fiber
demands, there are medical nutritional products available to you.
A company called Woodbury Products Inc. is a provider of NUTRA/BALANCE
PRODUCTS.
Nutra/Balance products offer two high fiber items that many of
our patients have had good results with.
These include:
Juice-Plus Fiber
¨ 10 grams fiber/serving
¨ $36.98/case (27 juices)
High Fiber Cookies
¨ 3 grams fiber/cookie
¨ $34.98/144 cookies
Purchase information is available at 1-800-431-1119 and ask for
Linda
New Research
AP: May 21, 2001
Genzyme reported new research that pushes for the screening for
CF to be broadened to include a wider range of gene mutations. This
information follows an announcement by the American College of Medical
Genetics which stated that couples planning a pregnancy or seeking
prenatal care be offered DNA testing to screen for common mutations
including CF. More than 10 million Americans are carriers of a CF
mutation, and more than 900 mutations have been identified on the
CFTR gene. Currently we test for 25 mutations known to occur with
a frequency of .1% in the U.S. population. However, Genzyme report
includes the fact that they have identified 64 mutations that occur
with this frequency. The 25-mutation test would miss 1 in 17 carriers.
The test currently offered by Genzyme looks at 87 gene mutations
(64 plus 23 rarer mutations.)
AP: May 23, 2001
Researchers are finding that in efforts to control the spread
of infection, it is mandatory to establish routine cleaning of computers
in central areas. At Michigan ’s own McLaren Medical Center
in Flint , computers were installed in all of the patient’s
rooms to assist with quality of care. With the new computers came
the spread of some rare bacteria not commonly seen within the hospital.
The researchers had found that the exhaust fan located within the
computer was spreading this bacteria. What to remember: clean all
areas of your home regularly. You never know what sort of bacteria
is being spread!
SciClone’s CPX, fiction or reality?
SciClone Pharmaceuticals announced on May 22, 2001 , that the company’s
protein-repair therapy for the treatment of CF has been granted
Orphan Drug Status in Europe . This drug is currently in phase 2
clinical trials in the US , where it has already been given Orphan
Drug Status by the FDA. Such status grants 10 years of marketing
exclusivity upon approval in Europe and 7 years in the US .
In pre-clinical trials in the US sponsored by NIH, CPX repaired
the two basic CFTR protein-associated defects that cause CF in most
patients. The drug was able to improve chloride ion transport and
enable the CFTR to reach the epithelial cell membrane. SciClone
is a pharmaceutical company that develops and commercializes unique
medicines. Some of the other big targets for SciClone include hepatitis
C, liver cancer, malignant melanoma, hepatitis B, HIV, TB and of
course CF. Let’s wish them luck
Soy, PIT, and CF: not a good partnership!
If you have been to see Dr. Pichurko in the last year and had the
chance to meet with me, everyone’s favorite dietitian, than
you probably heard me mention the use of soy products. Soy and soybean-derived
foods are becoming more and more popular in the United States .
However, some research is telling us that CF patients may want to
take caution with overuse of soy products. Soybeans have been grown
over the last 50 years to increase the naturally occurring fungicide
called phenyl isothiocyanate or PIT. Modern soybeans contain 2000-2500
parts per million of PIT where some old varieties only contained
1-2 parts per million of the same compound.
Why is this important for the CF patient? One of the systems that
are affected by CF is the glutathione system, a natural antioxidant
system within the body. Selenium, a mineral, plays an important
role in this system by forming the glutathione peroxidase, a critical
enzyme in the pathway. Without enough selenium, there is not enough
of the critical enzyme and therefore it cannot function as well
as an antioxidant.
PIT found in soybeans actually displaces selenium and in effect
removes it from the body. PIT also interferes with the digestive
enzymes as well. Because patients with CF commonly have problems
with both of these systems, it is recommended that patients use
caution when using modern soybean products in excess.
A High-Calorie, High-Fiber Delicious Dessert
Ready for an easy, good, high fiber, high calorie recipe? Well
here it comes.
| Ingredients: |
 |
· 1 cup 100% bran cereal
· 2/3 cup raisins
· ½ cup dark or light molasses
· 2 T unsalted butter cut into small pieces
· ¾ cup boiling water
· 1 egg
· 4 ounces (1 generous cup) walnut or pecan halves
or large pieces
· ½ cup dates cut into pieces
· ½ cup unsifted all-purpose whole-wheat flour
· ½ cup unsifted all-purpose white flour
· ½ t baking soda
· ½ t slat
· ½ t ginger
· ½ t cinnamon
|
Preheat oven to 350, butter an 8 ½” x 4 ½”
x 2 ¾” loaf pan. Dust the pan with wheat germ, quick
cooking oats or dry breadcrumbs.
Place the bran, raisins, molasses and butter in a large mixing
bowl. Add boiling water and stir to mix and melt butter. Beat the
egg and stir it in. Stir in the nuts, dates, and optional seeds.
Sift over the bran mixture both flours, baking soda, salt, ginger
and cinnamon. Bake for 40 minutes until top is barely firm to the
touch. Cool for 10-15 minutes. Cover pan with a rack and turn over
the pan. Let stand and cool.
Maida Heatter’s New Book of Great Desserts
Cystic Fibrosis Monthly Newsletter
Providence Hospital Adult CF Clinic
Julie Feldman, MPH, R.D., 248-424-3000 ext. 3641 |
