Proclamation 5581 --
National Epidermolysis Bullosa
Awareness Week, 1986
By
the President of the
A
Proclamation
Epidermolysis bullosa
is a group of hereditary, blistering disorders that involves the skin and mucous
membranes, especially mucous membranes of the mouth, eye, and gastrointestinal
tract. Symptoms of the disease can resemble severe burns and can be very
painful and debilitating. The disease can lead to scarring, malnutrition,
anemia, and even premature death.
As
many as 50,000 Americans, most of them children, are affected by epidermolysis bullosa. The
disease not only disables people physically and emotionally, it also places a
severe financial burden on their families.
Basic
research is just beginning to reveal the underlying causes of epidermolysis bullosa. Recent
developments in biology, biochemistry, pathology, immunology, and genetics are
all being employed to study the disease. The main objectives are to understand
the basic mechanisms that lead to this distressing disorder and to develop
therapies directed at correcting these effects.
The
Federal government and private volunteer organizations have developed a strong
and enduring partnership committed to research on epidermolysis
bullosa. I am confident that this concerted effort
will ultimately uncover the cause and cure for this devastating disease.
The
Congress, by Public Law 99 - 459, has designated the week beginning December 1
through December 7, 1986, as ``National Epidermolysis
Bullosa Awareness Week'' and authorized and requested
the President to issue a proclamation in observance of this event.
Now,
Therefore, I, Ronald Reagan, President of the
In
Witness Whereof, I have hereunto set my hand this second day of December, in
the year of our Lord nineteen hundred and eighty-six, and of the
Ronald
Reagan
[Filed
with the Office of the Federal Register,
Note:
The proclamation was released by the Office of the Press Secretary on December
3.