Local Doctor Conducting Cystic Fibrosis Study

              Local Doctor Conducting
Cystic Fibrosis Study
By MARGARET MARTIN .
Times Medical Writer
In Houston, Tex., a draftsman
with cystic fibrosis continues to
work,
An important research analyst
and a pharmacist in Los Angeles
suffer from the same disease but
continue on their jobs.
In fact, there are an estimated
30,000 men, women and children
in the United States who suffer
from the disease which was first
identified in the mid-30s.
They suffer from a disease
that as recently as 1950 killed
half of all children afflicted with
it before they were one year old.
Today the survival rate is about
80 per cent past five years.
But. there are problems.
To get answers to these prob-lems
the National Cystic Fibrosis
Research Foundation, working
with a grant from the Depart-ment
of Health, Education and
Welfare, has just completed a
pilot study on "Life Adjustment
Problems of the Young Adult
with Cystic Fibrosis."
Principal investigator for the
Study is Dr Bettina Hilman
head of the Pediatrics Depart-ment
at Confederate Memorial
Medical Center, and a member
of the staff of Louisiana State
University Medical Center at
Shreveport. Consultant for the
$21,291 project was Milton Rosen-zweig,
Shreveport psychologist,
and Dr. LeRoy W. Matthews of
Cleveland, Ohio, was project
director.
In Shreveport to assist in
writing the program is Paul
Nathan of New York City,
science editor for the national
foundation.
Cystic fibrosis is an inherited
disease involving a defect in
metabolism. Doctors don't, know
much about why the ailment
occurs, but it involves either an
excess or lack of some essential
hormone or enzyme.
The disease produces a glue-like
mucus in the various organs
of the body and kills quickly
when air passages of the lungs
are blocked. Dr. Donald B.
Strominger. director of the Re-search
and Care Center for
Cystic Fibrosis at St. Louis
Children's Hospital, describes the
mucus in a sufferer as "having
the consistency of bubble gum
laying in the middle of a street
on a hot August day," while
normal mucus is thin and
slippery.
Diagnosis is difficult since in
the early stage its symptoms
resemble those of other illnesses
such as pneumonia, whooping
cough, chronic bronchitis, asth-ma,
and some other diseases,
said Paul.
The chief diagnostic tool is the
"sweat test," devised in 1954 to
measure the chloride and sodium
content of the sweat since it was
noted that the sweat of cystic
fibrosis children is unusually
salty.
Symptoms, in addition to ab-normal
sweat, include persistent
coughing, wheezing, and failure
to gain weight despite a hearty
appetite.
Treatments vary but include
enzyme extracts, antibiotics, use
of a plastic tent at night and
postural or bronchial drainage.
To get answers to the question
of how the young adults are
faring and ideas on how to help
them, the group planned 32
interviews and sent out 151
questionnaires to cystic fibrosis
patients in Houston, Los Angeles,
and New York.
Paul explained that cystic
fibrosis is a lifelong disease, and
its sufferers want to work,
marry, and have families, but
"they need help and guidance."
"To see how we could help
them, we had to study the
population suffering with the
disease," he said.
Questionnaires Sent
With a series of questionnaires
sent to the patient, parents,
social workers and physicians,
the workers came up with some
suggestions.
Although many of the patients
are employed, the study showed
that there is a need for more
vocational guidance, and more
education for the students.
"For instance," Paul said,
"many of the patients aren't
aware that there are vocational-rehabilitation
college scholar-ships
available for them."
The study revealed that if the
special health problem could be
introduced into the school sys-tems,
the patients could get
s'pecial guidance.
The taped interviews done by a
social psychologist, showed that
the emotional and physical condi-tions
of the patients "are in
some ways much like the normal
population."
Nathan explained that one
youth in good physical condition
was emotionally depressed, while
a girl in "a less good physical
condition was in a better emo-tional
state."
He said that the report also
showed the young adults are
m o r e academically qualified
than the average student and
attendance records in shcool are
high.
The report revealed though,
that the group could be benefited
by more help, understanding and
counseling.
Patients are treated at the
local Louisiana State Department
of Health, Handicapped Children
Clinic. Cystic Fibrosis section,
which is held at Schumpert
Hospital, and headed by Dr.
Hilman.
Other staff members are Mrs.
Dorothy E. Leonardis. nurse:
Mrs. Frances Frazier, social
worker; Mrs. Barbara Judlin.
nutritionist; Mrs. Carolyn Boyds-ton,
physical therapist; Mrs.
Rqxie Monsour, medical technol-ogist,
and Mrs. Marjorie Brown,
secretary.
PAUL NATHAN